Help4HD-International.org

HELP 4 HD with Dr. John La Puma, Chef MD

2012-01-30T22:06:00.000-08:00

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BACK BY POPULAR DEMAND...

Monday, December 26, 2011, 3:30 pm PST
Our incredible special guest on HELP 4 HD is Dr. John La Puma, a board-certified specialist in internal medicine and professionally trained chef. We will be talking about ways to help our H’Dear caregivers and community look, feel and live better through healthy eating and living. We recorded live on April 21, 2011 and will re-air this episode at a later date.

Dr. John La Puma is the leading practicing physician voice for the importance of food in health care, and a New York Times best-selling author twice, he has pioneered food-as-medicine that's tasty and life-changing. Also an award-winning TV host, he has starred in over 100 episodes of "What's Cooking With ChefMD?" and co-hosted Lifetime TV's "Health Corner" with Joan Lunden.

He has appeared on Today, Good Morning America, Oprah.com and NPR and has been published in Guideposts, Shape, the New England Journal of Medicine, JAMA and the New York Times. He developed recipes for Dr. Oz and Roizen's New York Times best-seller You the Owner's Manual. His PBS Special “Eat and Cook Healthy with Dr. John La Puma” premiered in March and will be shown nationwide on PBS in June, so check your local listings.

Repeatedly named "One of America's Top Physicians" by the Consumers' Research Council and called a "Secret Weapon" by The Wall Street Journal, Dr. La Puma was honored with the American Medical Association's NAMC 2007 "Award of Excellence". He creates private programs for patients, using Chef Clinic strategies to work with his patients with weight problems, personally coaching them to transform their lives with what they eat, and to look, feel and live better.

Connect with Dr. John La Puma at http://drlapuma.com or be his fan at http://facebook.com/drjohnlapuma

Chef ClinicFounder, Director Jan 1996 to present
With Chef Clinic, I write books (ChefMD, RealAge, Ethics), invent self-help quizzes (GlutenFreeQuiz.com), and help companies and individuals make themselves look and feel better with at-hand tools: stress management, cooking demos and techniques, and up-to-the minute research.

ChefMdCo-Founder /Author · Santa Barbara, California
ChefMD.com aims to make eating healthy easy, with my recipes, Lifetime TV videos, and FB posts.

Santa Barbara Institute for Medical NutritionPhysician-Nutritionist and Coach · Santa Barbara, California
I see patients with the Institute for weight loss and lipid control with lifestyle change.

Find Dr. La Puma at www.drjohnlapuma.com and on www.facebook.com/DrJohnLaPuma .

The HD View – Phillip Hardt – Compassionate Allowances

2012-01-30T21:41:00.000-08:00

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Wednesday, December 21, 2011

We have a very special guest tonight… Phillip Hardt is an expert on SSA, SSI, getting disability and the Compassionate Allowances criteria set forth by the Social Security Administration, Phil is going to help us understand how Huntington’s falls under the "Mixed Dementia" category which can help our H'Dears get qualified for disability.

Phil has his Bachelors and Masters degrees in Arts and English. He is the Executive Director, Hereditary Neurological Disease Centre Arizona, Special-izing in Huntington’s Disease. Assists those with HD get off the streets, out of jail, and assist Phds get into safe assisted-living facilities, get onto State and Federal benefits like Social Security Disability. Consumer Advisor Board Member, Phoenix Children’s Hospital (PCH) 340B Hemophilia Factor Program. As an advocate for those who have bleeding disorders in Arizona. Find Phil on www.philliphardt.com, http://wehaveaface.org/help4hd-news-information.html.

The HD View with Dr. Christopher Ross from Johns Hopkins

2012-01-30T21:30:00.000-08:00

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Monday, December 19, 2011

We have a very special guest tonight…
Christopher A. Ross MD, PhD is Professor of Psychiatry, Neurology, Pharmacology and Neuroscience at Johns Hopkins University School of Medicine, Director of the Division of Neurobiology, Director of the NINDS-funded Baltimore Huntington’s Disease Center, and Director of the Huntington’s Disease Society of America Center of Excellence at Johns Hopkins.

He received his M.D. and Ph.D. in Neuroscience at Cornell University School of Medicine, had residency training in psychiatry at Johns Hopkins, and postdocs in Neuroscience and Molecular Biology in the labs of Sol Snyder at Johns Hopkins and Axel Ullrich at the Max Planck Institute for Molecular Biology in Germany. His lab focuses on the neurobiology and neurogenetics of human brain diseases, with continuing studies of Huntington’s disease, as a model for approaches to brain disorders. Basic research in HD has included identification and characterization of the HD gene product huntingtin, (and huntingtin modifications and interactions), generation and study of cell and transgenic mouse models of HD, and development of preclinical therapeutic interventions. Recently, as part of an NINDS funded consortium.

Dr. Ross has spent many years taking care of HD patients and families, and studying the progression of HD in the clinic, as well as probing the biology of HD in the lab. Recently his lab has devoted substantial effort to development of stem cell models of HD (using “induced pluripotent stem cells” derived from HD patient biopsies). He has wide-ranging expertise in HD and its treatment.

Clinical studies in the HD Center have included identification of biomarkers of disease onset and progression in the prodromal and manifest disease period using multimodal magnetic resonance neuroimaging (MRI), and development of clinical trials in the prodromal HD population. The research in the Neurobiology Division ranges from constructing and studying cell and mouse models of disease and identification of therapeutic targets, to clinical and imaging studies of patients and clinical trials of novel therapeutic agents.

Dr. Ross is PI of the first large multicenter therapeutic trial in HD, the PREQUEL study, and has participated in many other clinical trials. Dr. Ross has been the chair of the HDSA Scientific Advisory Board, and then chair of the HDSA Medical and Scientific Advisory Committee, as well as a member of the HDSA National Board of Trustees. He was the founder, and has been a continuing member of the HDSA Coalition for the Cure, a consortium of HD researchers dedicated to understanding HD and finding effective treatments. Among other honors, Dr. Ross has been awarded a NARSAD Distinguished Investigator award, the Cornell University Graduate School Alumni Award, the Milton Wexler prize for Huntington’s disease research, and the Guthrie family humanitarian award.

The HD View with Ana de Lara

2011-12-10T17:50:00.000-08:00

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Monday, December 12, 2011 - Happy Monday everyone and thank you for tuning in to Help 4 HD – The HD View! Please tell all your friends and family about Help 4 HD and click “Follow” on our Show Page to get email reminders of upcoming episodes. We are literally at the brink of 10,000 listeners now… it is fantastic and we thank you for your support and interest in HELP 4 HD programming.

Tonight, we are all honored to welcome our incredible special guest Ana De Lara. Since 2007, Ana has written, directed, and produced a number of award winning films that have screened at festivals, including the Montreal World Film Festival and the Rhode Island Independent Film Festival. Her amazing film: "Near Silence" brings the reality of living with Huntington's disease to the forefront in a dramatic portrayal. One of our very own film team members, June Brown, introduced us to this amazing film several months ago, and we had hoped this night would come. We look forward to having a great conversation regarding Ana’s connection to HD and her outstanding film! We will be discussing a sensitive subjects tonight - Euthanasia (also referred to as- "assisted-dying" "assisted-suicide"), and stigmas facing the JHD/HD community. Ana De Lara’s film “Near Silence” portrays the painful and emotional decision to end the life of a loved one who suffers from Huntington’s disease. We truly recognize and respect the opinions and views of our listeners, and our aim is to facilitate a way for our community to discuss sensitive topics such as Euthanasia. We will take a short break and return with our special guest. Please feel free to call in or communicate with our team in the chat room. Now let’s listen to The HD View soundtrack!

The HD View ~ Getting Disability Part 2

2011-12-10T17:27:00.000-08:00

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Monday, December 5, 2011 on The HD View we will be discussing specific ways in which people may have success in getting disability for themselves or their loved ones who are suffering from the ravages of Huntington’s disease. Last month we talked about what people are being told about getting the actual diagnosis of HD with their positive genetic test and how it relates to their CAG repeats by their physicians and HDSA Centers Of Excellence.

Tonight we are going to find out how to get disability with special panelist Phillip Hardt who has been advocating and caring for our JHD and HD community for a very long time. He has helped thousands of people get their disability and he has just launched a very comprehensive website: www.philliphardt.com which contains lots of incredible articles and information about this very subject and much more.

You may also find Phil’s downloads “Applying for Social Security Disability…” and the “Compassionate Allowances” at www.wehaveaface.org/help4hd and on the Help 4 HD app. Getting disability will be another hot topic in “The Huntington’s Disease Film Project”.

Again, we want to hear your experiences with the process of getting disability. Please send us your experiences, questions and concerns and let’s get to the bottom of all this confusion about how to get disability.

EMAIL YOUR QUESTIONS OR COMMENTS TO “MELISSA” AT help4hd@yahoo.com

Note from the creator of The HD View: In this “Getting Disability” series we cannot guarantee that any of these techniques will produce a successful outcome for everyone. However, Phil Hardt has helped thousands of people get their disability. He has offered to help you personally if you have questions or difficulties, you may contact him at phardt1@cox.net or phone: 602-309-3118.

Don’t forget the Help 4 HD app is free at www.wehaveaface.org/application or at iTunes and Android markets. Phil’s downloads: “Applying for Social Security Disability…”, the “Compassionate Allowances” and much, much more are also available on the app.

Your devoted Host,

Melissa Biliardi

Help 4 HD with Katie Jackson

2011-12-10T17:06:00.000-08:00

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Monday, November 28, 2011 – Our incredible special guest tonight is Katie Jackson, author of Ferris Wheel and advocate extraordinaire for Huntington’s disease. Katie is an inspiring author in Sacramento, California and she began writing Ferris Wheel in 2006. Although Ferris Wheel is a fiction novel, many of the events in the book are actual experiences of the author. In 2006, Katie Jackson’s husband Michael discovered that he carried the same genetic neurological disease as his biological father; that of Huntington’s disease. Today there is no cure for Huntington’s disease and as can be expected, the diagnosis was life shattering and turned their lives upside down. Katie soon found that writing was the only way in which she could effectively cope with her husband’s diagnosis. Katie and Michael now have two beautiful children, Cooper and Madison, and currently reside in Northern California.

Synopsis

Ferris Wheel is a compelling contemporary drama that is difficult to pigeonhole. On one level, the story is a poignant, slice-of-life examination of the extraordinary relationship that gradually develops between two young people and the devastating disease that eventually overshadows their lives; but it’s so much more than that. The love between Kathryn Price and Carson Ferris is rock-solid and much more innocently restrained than that which is common in the modern romance genre.

The story ventures onto tragic ground when a painful fate overwhelms them and comes to define their lives, threatening not just their health but their wills as well. This isn’t happily-ever-after territory, though most of the story explores the joy and rewards of a mature relationship between a man and woman deeply in love- and despite its dark turn, it ends with a glimmer of genuine hope. However you care to categorize it, this character driven tale will make you sit up and take notice, and is likely to bring you to the verge of tears more than once.

Contact: Katie Jackson, katie@katie-jackson.com
Website: http://katie-jackson.com/Contact.html

Get her book: https://www.lulu.com/commerce/index.php?fBuyContent=10270183

HAPPY 1ST YEAR ANNIVERSARY - HELP 4 HD

2011-12-10T16:50:00.000-08:00

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Monday, November 21, 2011 - at 3:30 pm PT/6:30 pm ET/11:30 pm UK time – Our AMAZING host: Melissa Biliardi celebrates her 1-year anniversary!
Tonight we will be honoring Melissa Biliardi for her outstanding dedication and advocacy for the JHD/HD community! Melissa is a pioneer! A year ago, she made the decision to pilot the first radio show specifically for Huntington's disease. Her efforts have brought us insight, education, and so many valuable resources over the year! Her special guests are found all over the globe, and each of her shows provides us with hope!

Tonight, we get to thank an amazing individual, and a dear friend - Melissa Biliardi. Please tune in! Feel free to email us and let Melissa know what her show has meant to you!

Your guest host: James Valvano

Email: James@WeHaveAFace.org

Help 4 HD with Stacy Brookhyser ~ Second Broadcast

2011-12-10T16:16:00.000-08:00

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NOVEMBER 14, 2011 ~ REPEAT PERFORMANCE (Original broadcast was on Monday, June 27, 2011) - Our incredible special guest is Stacy Brookhyser, mother of twins free of HD. She is a super duper proactive HD warrior who is spreading the word about a new procedure to stop HD in its tracks.

The Procedure: IVF/PGD
Yes, you can stop Huntington's Disease in the future generations of your family! With the help of skilled medical professionals, YOU have the ability to prevent your children from inheriting HD.

After in-vitro fertilization (IVF), embryos can be tested using pre-implantation genetic diagnosis (PGD) to determine their genetic makeup. When the embryos contain eight cells, they are tested for the HD mutation in the Huntingtin gene. Only embryos with the unaffected gene are transferred to the mother. These embryos will never get HD or transmit it to their children. The procedure essentially eliminates HD from that family line. Forever!

IVF with PGD usually costs between $9,000 and $18,000. The cost depends on the fertility specialist you select and his or her fees. At first glance, this looks like a lot of money. But compared with the lifelong emotional toll of wondering whether your child has HD, and possibly compared with care expenses and suffering associated with HD, this is a relatively small burden to bear.

Some states require that medical insurance plans cover IVF. Others leave it up to the plan. But even when a plan does not usually cover IVF, it may be possible to get some coverage due to an existing condition (i.e. being genetically predisposed to HD). If the insurance company considers IVF/PGD medically necessary, it may help with some or all of the cost.

Stacy's website: www.hdfreewithpgd.com
Contact: stacybrook@aol.com

The HD View ~ Getting Disability Part 1

2011-11-05T19:54:00.000-07:00

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Monday, November 7, 2011 on The HD View we will be discussing ways in which people in the HD community may or may not be having success in getting a diagnosis for disability for themselves or their loved ones who are suffering from the ravages of Huntington’s disease.

We will be talking about what people are being told about getting the actual diagnosis of HD with their positive genetic test and how it relates to their CAG repeats by their physicians and HDSA Centers Of Excellence. For some the genetic test is not an option until they have severe visible symptoms of HD. But, for others managing early symptoms makes life much more comfortable.

We want to hear your experiences with the medical professions and we are looking to bring about a better understanding of what the actual criteria is for diagnosing Huntington’s disease. How is it that some people have no trouble getting disability, but others experience years of denials and appeals? Why do some doctors diagnose with early symptoms and others refuse to diagnose until their chorea is explicitly obvious? What if you don’t get chorea until late in the disease but have other devastating symptoms? We will be discussing our experiences with the HDSA Centers of Excellence and other medical professionals in getting diagnosed.

Is there a standard criterion for diagnosing Huntington’s disease? If so, who developed it and how long ago? My COE Neurologist says yes and the criteria are changing, so we need to find out what that entails. This program will be “Part One” of a series about “Getting Disability” and once we have answered specific questions about how a person gets diagnosed for disability, we will be covering this topic in “The Huntington’s Disease Film Project” at www.WeHaveAFace.org.

Please send us your experiences, questions and concerns and “let’s talk about it”. Let’s get to the bottom of all this confusion about how to get diagnosed for disability and how to get treatment for symptoms no matter how slight or severe they are. It’s going to be a very rifling and informative program.

EMAIL YOUR QUESTIONS OR COMMENTS TO “MELISSA” AT help4hd@yahoo.com

Note from the creator of The HD View: In this series on getting disability we will not be bashing doctors or centers, but rather we will be discussing possible solutions to hundreds of issues that face our H’Dear community relating to disability and medical treatment. My son and I just returned happily from our Center of Excellence at UC Davis and I just filled out the survey at www.hdsa.org/living-with-huntingtons/resources/centers-of-excellence/index.html. We all need to give feedback whenever and where ever we think it’s necessary. Then follow up!

Finally, please provide any additional comments or information you think would be helpful in evaluating this HDSA Center of Excellence. If you would prefer to send an email, please contact Dlovecky@hdsa.org with your comments. Be sure to identify the Center of Excellence you are writing about.

In the October issue of “Prevention Magazine” Dr. Oz urges everyone to challenge your doctors, understand your body, and demand better care… “Great advice!”

May I also suggest that in order to get the best possible result from visits to your centers and physicians, download Dr. LaVonne Goodman's "Treatment algorithms can help you become a Huntington's disease "Symptom Survivor" and the "...Patient and Family Summaries & Flow Charts" for the different diagnosed symptoms of Huntington's disease at www.wehaveaface.org/HDDW.html. Not only will these guidelines help you to be better prepared for your visit, but it will also give your physicians a tangible reference to work from.

And get the Help 4 HD app at www.wehaveaface.org/application.html. This is another tangible resource for everyone!

Your devoted Host,
Melissa Biliardi

Halloween 4 HD

2011-11-05T19:26:00.000-07:00

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Halloween 4 HD
Monday, October 31, 2011 at 3:30 pm PT/6:30 pm ET/11:30 pm UK time – Tonight’s episode of Halloween 4 HD is not only going to be fun and a little silly being Halloween, but we are going to talk about some very interesting accounts of visions and pre-death experiences of the paranormal kind. Some of these are just urban legends, but others are true and personal accounts from some of our own H’Dears. I know many of you out there have stories of your own to share and we would love to hear about them too, so don’t hesitate to call-in or chat-in your stories.

Tonight we will be highlighting an incredible book by author John Lerma, MD titled “Into The Light”. Maybe you’ve heard about this poignant book. It’s an accounting of real live stories about angelic visits and other pre-death experiences. If you haven’t already read it, this book comes highly recommended. It will leave you feeling uplifted in faith, hope and love. John Lerma, MD is the inpatient medical director for TMC Hospice in Houston. He has spent more than 10 years caring for terminally ill patients. The follow-up book to this one is titled, “Learning From The Light”, another highly recommended read.

It's a very fun show to listen to...

The HD View with Dr. LaVonne Goodman

2011-10-22T15:09:00.000-07:00

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Monday, October 17, 2011 at 3:30 pm PT/6:30 pm ET/11:30 pm UK time – Our incredible special guest is Dr. LaVonne Goodman. Read about her latest amazing project…

Posted Sept 12, 2011 by LaVonne Goodman M.D.

During my years as an internal medicine physician, I have used standard of care guidelines for my patients with conditions like diabetes and heart disease. Guidelines are developed by experts in each disease who translate clinical trial evidence and/or expert experience into recommended care patterns for use in medical offices or at the bedside. When followed, guidelines have been central to improving the quality of care provided by all physicians whether they are specialists or generalists.

So when I began taking care of Huntington's disease (HD) patients, I looked for standard of care guides to help me provide quality medical care. What I found was lack of information…

Huntington's Standard of Care Guides

Though the Huntington's Disease Society of America (HDSA) has provided the "A Physicians Guide to the Management of Huntington's Disease" for more than a decade (3rd edition recently available), there have been no published guides that have been peer-reviewed by physician leaders from the European Huntington's Network (EHDN) or Huntington Study Group (HSG). Fortunately over the last 3 years both groups have spearheaded efforts within working-group committees to establish HD standard of care guides; however, this effort has proved difficult because individual experts may disagree, and there is lack of evidence from clinical trials to support any opinion.

Though it isn't equal to an evidence base, expert experience can be valuable. As part of a project to help develop HD treatment guides, I worked with EHDN and HSG doctors to identify (through surveys) the drug treatment patterns of a large number of international experts for three symptoms of HD. And also important to getting this information out, we worked to put the combined results into a format that would be useful, accessible, and could effectively fit into times frames of general physician office visits. Why is this important? General physicians and general neurologists provide medical care for many, indeed probably most, HD patients. Having easy access to the experts' care patterns can improve the quality of care delivered by busy doctors who have limited experience with HD and need time-efficient guides.

Contact Dr. LaVonne Goodman: lavonne@hddrugworks.org
Website: http://hddrugworks.org
Download Algorithms at www.wehaveaface.org/HDDW.html

The HD View with Frances Saldaña

2011-10-17T19:56:00.000-07:00

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Monday, October 17, 2011 at 3:30 pm PT/6:30 pm ET/11:30 pm UK time – Our incredible special guest is Frances Saldaña Advocacy Chairman for the HDSA Orange County Chapter; Patient Advocacy Committee Member with the Sue and Bill Gross Stem Cell Research Center at UC Irvine; and she was Keynote Speaker at the World Symposium of the Huntington Study Group is October this year.

Frances’ journey as an advocate for Huntington’s disease patients started thirty years ago, when her husband was given the fatal diagnosis of Huntington’s disease. With very elusive information and no real knowledge of what Huntington’s disease was, her primary concern at the time was simply survival. Beyond that, only the ability to focus on caring for her husband and her three young children remained. Behind her busy life was the subconscious knowledge that her three young children were now “ask risk” for inheriting the fatal disease.

Soon after the death of her husband in 1989, her youngest daughter started exhibiting symptoms of the dreaded disease, and Frances quickly launched an aggressive campaign to bring visibility and to educate the public and healthcare providers about Huntington’s disease. Her advocacy included palliative care, community HD resources, housing, comfort, and meaningful social interaction. This all came together for her as a member of the Peer groups who authored “Lifting the Veil of Huntington’s Disease”, a project supported by the Robert Wood Johnson Foundation.

Although Frances’ youngest daughter, Marie, was demonstrating HD symptoms at a very young age, there was still no test available for Huntington’s. It was not until 1993, when a test was finally developed, that her oldest daughter, Marguerite, elected to have the DNA test, and to everyone’s shock, the results were positive. This diagnosis further motivated Frances to work faster to save her children. In 1996, three years later, Marie asked to be diagnosed and, as expected, the results were positive for HD. Soon after, her only son, Michael, was diagnosed with Huntington’s disease in 1999.

From the time that her first child was diagnosed, Frances explored treatments, traditional and non-traditional approaches that would integrate attention to personal care, as well as curative treatment in an effort to halt the progression of the disease and to improve overall quality of life for them. She brought this knowledge, drive and passion together through the start-up of the HDSA Orange County Affiliate, and in the last year became and HDSA Chapter. She served as Affiliate Chairman from 2000 to 2008, and as Advocacy Chairman in the last two years. HDSA Orange County was named Affiliate of the Year by the national HDSA office in 2006 and again in 2009. Frances was instrumental in advocating for a monthly Huntington’s disease Clinic at UC Irvine, headed by Dr. Neal Hermanowicz. The clinic is now in its fifth year.

In 2003, Frances represented the “caregivers” and was a member of a national peer group of physicians and clinicians in publishing “Lifting the Veil of Huntington’s disease”, a “Promoting Excellence at End-of-Life” project funded by the Robert Wood Johnson Foundation.

In 1995, Dr. Peter Donovan and Hans Keirstead invited Frances to represent the HD community in the Sue and Bill Gross Stem Cell Research Center Patient Advisory Committee. Frances has advocated for Huntington’s disease at the California Institute for Regenerative Medicine at the various Board meeting locations. She is currently working with the HDSA national office on advocating for the HR 678 Social Security HD Parity Act and has met with legislators at the local, state, and national level.

The collaboration between researchers, doctors, clinicians, clinicians, pharmaceutical companies, HD families, and State and Federal governments in support of research and clinical trials has been a model template for all humanity. Only through this movement to eradicate Huntington’s Disease has Frances found the strength and stamina to continue in her mission to give HD patients not only HOPE, but to continue to advocate for the dignity, comfort and care that deserve.

In 2006 that Frances finally resigned herself to the realization that the cure would not be here in time to save her children. However, she continues to hold on to the hope for the cure, finding comfort in the knowledge that breakthroughs in research continue at a rapid pace. She knows that her two grandchildren and future generations will never have to face the fatal diagnosis that Huntington’s disease brings.

HELP 4 JHD ~ HDYO with Matt Ellison RESCHEDULED

2011-10-10T22:04:00.000-07:00

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Tuesday, October 11, 2011 at 3:30 pm PT/6:30 pm ET/11:30 pm UK time – Our incredible special guest tonight is Matt Ellison, founder of HDYO (Huntington’s Disease Youth Organization). Launching in January 2012, HDYO is an organization that will focus specifically on supporting young people (kids, teens and young adults), all around the world, that are impacted by Huntington’s disease. The HDYO goal is to create and improve support for young people on a global scale. We hope to provide a place for young people everywhere to receive appropriate support and educational information with regards to Huntington’s disease. Ultimately HDYO aims to be a well-respected and trustworthy organization for young people and their families to access support.

Multilingual site and content, thanks to the HDYO Translator Team!
Brand new material created specifically for young adults, teenagers, children and parents.
Content covering many of the issues young people face with regards to Huntington’s disease.
Lots of videos and speeches!
Interactive and educational material to help young people learn about Huntington’s disease in an engaging format.
The opportunity to ask Huntington’s disease experts any questions you may have in our “Ask a question” section!
Newsletters, radio shows, interviews and much, much more!

HDYO consists of many people working together to improve the support available for young people impacted by Huntington’s disease.

The HDYO Board is comprised of young people impacted by Huntington’s disease, who all have some experience in Huntington’s disease youth work.

HDYO’s Feedback Committee is made up of a mix of families affected by Huntington’s disease and professionals such as prominent researchers, health care professionals, and HD youth workers. Their role is to provide feedback on all HDYO content before it is cleared for use.

HDYO’s Translator Team are an incredible bunch of people that translate all HDYO content in to a dozen different languages so that young people around the world can access information and support. Most of HDYO’s translators are young people impacted by Huntington’s disease, from all around the world. If you think you could help HDYO with translating into any language, contact us at info@hdyo.org - we always appreciate more support.

The HDYO International Committee is for young people from different regions of the world to join and provide their opinions on youth support in their area. Their thoughts and opinions will shape HDYO’s new content, plans and projects moving forwards.

Reach Matt Ellison at just1moreperson@yahoo.com
Website: www.hdyo.org

HELP 4 JHD with Dr. Jane Paulsen & Stacie Vik

2011-10-10T21:52:00.000-07:00

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Monday, October 10, 2011 – 5:30 pm CT - Our incredible special guests tonight are Dr. Jane Paulsen and Stacie Vik from the University of Iowa. UI is currently recruiting individuals who have shown features of JHD before the age of 20 to be a part of a Natural History Study to research the effectiveness of clinical measurements relating to Juvenile Huntington’s Disease.

This study will compare the current adult version of the Unified Huntington’s Disease Rating Scale (UHDRS ‘99) with a new modified version specifically developed for the JHD population. The purpose of this research study is to better understand JHD, and to improve the currently available tools to follow the course of the disease in this younger age group. Both parents and individuals affected by JHD who are interested in being involved in this research project are encouraged to contact Michelle Harreld at 319-384-1174 or michelle-harreld@uiowa.edu for more information.

ABOUT OUR GUESTS

Jane Paulsen, PhD, is the Principal Investigator of The University of Iowa’s Juvenile Huntington Disease Natural History Study. She has collaborated with the European Huntington’s Disease Network/JHD working group and oversees JHD research at The University of Iowa. A prominent researcher in her field, Paulsen has given talks and presentations on JHD at various HD events around the world, most recently at the 2011 Huntington’s Disease Society of America Center of Excellence. She’s a member of the JHD Initiative, an organization started by JHD family members to raise awareness and funds for JHD research. Paulsen is also the Principal Investigator for the PREDICT-HD study and several other HD research projects. She received the 2011 Distinguished Achievement Award at The University of Iowa’s Celebration of Excellence and Achievement Among Women. She is Professor of Psychiatry, Neurology, Psychology and Neurosciences at The University of Iowa Carver College of Medicine.

Stacie Vik, BA, is Co-Coordinator of The University of Iowa’s Juvenile Huntington Disease Natural History Study. She administers testing with JHD participants and their guardians during research visits and is involved in preparing the upcoming JHD grant application. She has traveled to several HD conventions, family conferences and JHD retreats to conduct on-site JHD research, most recently at the 2011 HDSA National Convention. She has also worked on several previous clinical trials, cancer studies, HD and JHD studies at The University of Iowa, and is currently Study Manager for the PREDICT-HD study.

We will also be discussing the JHD Qualitative Study at the University of Iowa. Tune in for a very informative program with Jane and Stacie. Go University of Iowa!!

Contact Dr. Jane Paulsen: jane-paulsen@uiowa.edu
Contact Stacie Vik: stacie-vik@uiowa.edu
www.uihealthcare.com/depts/huntingtonsdisease/studies/jhd.html
www.jhdkids.com

The HD View Premier on Help 4 HD

2011-10-04T19:04:00.000-07:00

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Tuesday, October 4, 2011 – Tonight is the special premier of The HD View a new HELP 4 HD pilot program where we will be discussing current topics and concerns of the JHD and HD community.

The goal is to get you talking about what matters to you. Let’s start talking about the unspoken issues that affect our H'Dears. It's time to step out of our comfort zone and talk about the real issues.

Our incredible special guests on The HD View will be prominent people in the JHD and HD community who want to help us with the difficulties and personal struggles of HD.

NOTE: The image of a knight slaying a dragon was my son, James’ idea. He says that we need to understand the nature of the monster or dragon as he sees it and we need to start talking about issues like PAIN. So, tune in to The HD View same time, same place, different format, but always in love, light and truth.

Thank you for your interest in Help 4 HD programming on Blog Talk Radio.

MELISSA BILIARDI
www.blogtalkradio.com/help4hd

HELP 4 HD ~ What is Enroll with Joe Giuliano

2011-09-26T14:44:00.000-07:00

Listen to the episode...

Tuesday, September 27, 2011, 6:30 pm ET – Our incredible special guest tonight is Joe Giuliano, Director of Clinical Operations at CHDI Foundation, Inc. He received his degrees in Chemistry and Nursing at the Catholic University of America in Washington, DC and trained in the Six Sigma and Lean Six Sigma methodologies. He applies these skills to develop more efficient clinical trial management processes. He joined CHDI in 2008.

Joe has 12 years of experience in academic and pharmaceutical research and development. This experience included working with Contract Research Organizations (CROs) and covered a broad range of therapeutic areas including CNS and imaging diagnostics. Most recently, Joe was with GE Healthcare as the Head of Clinical Project Management globally and where he led the Clinical Operations Team in North America. While at GE Healthcare, Joe successfully led a team that recruited and set up a global PET Investigator Network and was instrumental in formulating strategy for the development of the next generation of PET/SPECT imaging ligands for CNS and oncology.

Before joining GE, Joe held positions of increasing responsibility at Merck & Co., Inc. and Target Research Associates, a CRO. He has planned and executed clinical development programs and managed large multinational clinical programs. Before entering the pharmaceutical industry, he was a Senior Research Nurse and Program Coordinator in the Division of Pediatric Neurology at Johns Hopkins University School of Medicine. There he oversaw a number of clinical research programs and worked closely with patient advocacy groups and other academic research collaborators.

Visit www.chdifoundation.org for more information about CHDI

Visit www.huntington-study-group.org for more information about COHORT

Email Joseph.Giuliano@CHDIFoundation.org

HELP 4 JHD ~ HDYO with Matt Ellison

2011-09-26T12:28:00.000-07:00

SORRY FOR THE INCONVENIENCE - RESCHEDULING THIS SHOW TIL MATT IS WELL...

www.blogtalkradio.com/help4hd/2011/09/26/help-4-hd-hdyo-with-matt-ellison

RESCHEDULED FOR Tuesday, October 11 at 6:30 pm ET/11:30 pm UK time – Our incredible special guest tonight is Matt Ellison, founder of HDYO (Huntington’s Disease Youth Organization). Launching in January 2012, HDYO is an organization that will focus specifically on supporting young people (kids, teens and young adults), all around the world, that are impacted by Huntington’s disease. The HDYO goal is to create and improve support for young people on a global scale. "We hope to provide a place for young people everywhere to receive appropriate support and educational information with regards to Huntington’s disease" Matt says. Ultimately HDYO aims to be a well-respected and trustworthy organization for young people and their families to access support.

Multilingual site and content, thanks to the HDYO Translator Team!
Brand new material created specifically for young adults, teenagers, children and parents.
Content covering many of the issues young people face with regards to Huntington’s disease.
Lots of videos and speeches!
Interactive and educational material to help young people learn about Huntington’s disease in an engaging format.
The opportunity to ask Huntington’s disease experts any questions you may have in our “Ask a question” section!
Newsletters, radio shows, interviews and much, much more!

HDYO consists of many people working together to improve the support available for young people impacted by Huntington’s disease.

The HDYO Board is comprised of young people impacted by Huntington’s disease, who all have some experience in Huntington’s disease youth work.

HDYO’s Feedback Committee is made up of a mix of families affected by Huntington’s disease and professionals such as prominent researchers, health care professionals, and HD youth workers. Their role is to provide feedback on all HDYO content before it is cleared for use.

HDYO’s Translator Team are an incredible bunch of people that translate all HDYO content in to a dozen different languages so that young people around the world can access information and support. Most of HDYO’s translators are young people impacted by Huntington’s disease, from all around the world. If you think you could help HDYO with translating into any language, contact us at info@hdyo.org - we always appreciate more support.

The HDYO International Committee is for young people from different regions of the world to join and provide their opinions on youth support in their area. Their thoughts and opinions will shape HDYO’s new content, plans and projects moving forwards.

Reach Matt Ellison at just1moreperson@yahoo.com

Website: www.hdyo.org

MATT ELLISON ON BBC

HELP 4 JHD with Lauren Holder

2011-09-10T16:29:00.000-07:00

Listen to internet radio with HD Support Groups on Blog Talk Radio

Monday, September 12, 2011 – Our incredible special guest tonight is Lauren Holder, woman on a mission to bring JHD/HD awareness and advocacy to the World. She is Chapter President of the HDSA North Carolina Chapter in Mebane, NC and she would like to know how she can help you help others. She is also participating in the PREDICT-HD Study because she wants to contribute to finding treatments and a cure for HD. “Do it and help the HD community,” she says, encouraging others to take part in HD research. “We’re helping the researchers and we’re helping ourselves.” She is beautiful and humble; she is the epitome of love and strength. What an amazing young woman whom I am proud to know and love!

"There are two types of people...those who live and those who live scared. You won't find me being the latter." Lauren Holder 2011

“I am emotional. I am determined. I like to think I'm a strong person, but I know I have my weak points. I tend to care way too much sometimes about everything and put myself last--I'm working on a better balance. It's just because I believe in loving with everything you have and putting others first. I don't believe in coincidences. I am strong in my faith and what I believe, but I do not push it on others. I love my husband and my dogs. My biggest hope and goal in life is to make a difference in the world. My biggest fear is forgetting--where I am, who I am, where I came from, etc.”

“I love music and singing; it relaxes me. But it's hard to catch me singing, so good luck! I love to dance, and I have learned to not be afraid to do it in front of anyone because I am not doing it for anyone but me. :) I love looking up at the stars. Writing also relaxes me. I wish I was smarter, though I'm not dumb, and try to learn new things all the time. I am an advocate for research and awareness of Huntington's Disease; it is a part of who I am.”

“I'm a constant work in progress, and I believe we all are. I believe, a lot of times, first impressions are wrong. I believe each person we meet brings something meaningful into our lives; life lessons, love, friendship, whatever it may be, it shapes us.”

“I believe laughter (and a little ice cream) can always make you feel better. I love a good joke. I think showing emotion and crying can be healthy, too. I don't believe in bottling things up. I do believe I need to let go of more things than I do. I am proud to be an American. I am proud of who I am, and I am happy with myself. This is me, take it or leave it.”

Find Lauren on FacebookEmail Lauren: laurenholder@gmail.com

HELP 4 HD with Chris & Lorraine Stiehl

2011-09-04T23:24:00.000-07:00

Listen to internet radio with HD Support Groups on Blog Talk Radio

Tuesday, September 6, 2011, 3:30 pm PT - Our incredible special guests tonight are Chris and Lorraine Stiehl who are the Patient Advocate Coordinators for CIRM - the California Institute for Regenerative Medicine - the state stem cell agency. This agency was created by Proposition 71 in 2004, when California voters overwhelmingly authorized a ten year bond issue of $3 billion for stem cell research. www.cirm.ca.gov

Lorraine Stiehl has a long history as an employee and volunteer for health agencies and research organizations, primarily in diabetes. She was named "Employee of the Year" and "Volunteer of the Year" for the Juvenile Diabetes Research Foundation, and was just named to the JDRF International Board of Directors. She also established chapters for the Lymphoma Research Foundation. She also was heavily involved as a volunteer in the Prop. 71 campaign in 2004.

Chris Stiehl is an independent consultant for Fortune 500 companies. He advises companies on how to listen to their customers and has written a book, Pain Killer Marketing. Chris also has had a Type 1 diabetes for over 50 years. He has volunteered for JDRF for decades, and has served as a member of the Board of Directors for the San Diego Chapter.

The Stiehl's job as CIRM Patient Advocate Coordinators is to educate, excite and empower stem cell advocates statewide. We will learn more as we talk with Lorraine and Chris.

For questions about CIRM or Patient Advocates go to www.cirm.ca.gov. You may reach Chris at chris@stiehlworks.com.

HELP 4 HD with Diana Dunkelberger

2011-08-26T22:14:00.000-07:00

Listen to internet radio with HD Support Groups on Blog Talk Radio

Monday, August 29, 2011 at 3:30 pm PT/6:30 pm ET/11:30 pm UK time – Our incredible special guest tonight is Diana Dunkelberger from the Paul Muchowski Lab at the Gladstone Institute, UC San Francisco in California. She recently received the HDSA Donald A. King Student Fellowship which gave her the financial resources to dedicate her summer to HD research.

Diana aspires to become a Neurologist and conduct translational research, so she will be heading off to medical school in the fall. We are going to learn about her very special project: Investigating the Immune System and the Role of the Cannabinoid Receptor (Type-2) in the Pathogenesis of Huntington’s Disease.

Diana will present comprehensive scientific information about her research. She is passionate about her work and says the main point to illustrate is that science isn’t big and scary, so this will definitely be a very educational and interesting episode.

HELP 4 HD ~ 2CARE Series Part II with Lisa de Blieck

2011-08-26T21:55:00.000-07:00

Listen to internet radio with HD Support Groups on Blog Talk Radio

Monday, August 22, 2011 – Our incredible special guest is Elisabeth (Lisa) de Blieck, MPA CCRC is a Program Manager at the Clinical Trials Coordination Center (CTCC), which is part of the Center for Human Experimental Therapeutics at the University of Rochester. Ms. de Blieck has over 20 years of experience in administrative project management and clinical trials coordination.

Lisa has been the senior project manager for several past and ongoing industry and federally funded multi-center clinical trials in Pediatrics and Neurology, particularly in Huntington's disease. These studies, funded by the Maternal and Child Health Bureau, National Institute for Neurological Disorders and Stroke, and the Food & Drug Administration Office of Orphan Products Development, have involved the collaborative efforts of individuals within a number of study groups, including the Huntington Study Group, Parkinson Study Group, Tourette Syndrome Study Group, Batten Study Group and the HIV/AIDS Neurologic Consortium.

She has also served on the protocol review committee for rare diseases for the National Institutes of Neurological Disorders and Stroke. Her primary role at the CTCC is as lead project manager for the Coenzyme Q10 Study in Huntington's Disease (2CARE), which is led by Dr. Merit Cudkowicz.

Contact Information
Website: www.huntington-study-group.org
Email: Lisa.DeBlieck@chet.rochester.edu

HELP 4 HD ~ International Film Project with James Valvano

2011-08-16T18:10:00.000-07:00

Listen to internet radio with HD Support Groups on Blog Talk Radio

Monday, August 15, 2011 – Our incredible special guest tonight is James Valvano and it’s time for an update about his international film project “The Faceless Faces of Huntington’s Disease: I am No Longer A Faceless Face”. He has recently returned from New York where he filmed two of his A-Team members. This is the first of many segments that need to be filmed. What started out as a short film that James created for the Neuro Film Festival has grown into a world renowned international film project spanning 89 countries.

James’ team, (the A-Team) consists of 13 driven individuals who are personally impacted by Huntington’s Disease and who are trying to make the world a better place for all H’Dears. It takes a team to make a project like “The Huntington’s Disease Film Project” succeed, but it takes a great leader to motivate and keep the vision alive. James is “that leader” and we wish him great fortune in order to complete his film.
VIEW THE TRAILER

The Huntington's Disease Project - Documentary Trailer from James Valvano on Vimeo.

CONTACT
James Valvano
Writer/Director
www.WeHaveAFace.org
Email: James@WeHaveAFace.org
Skype: JamesValvano
Twitter: WeHaveAFace
Vimeo: Vimeo.com/WeHaveAFace
YouTube: WeHaveAFace

HELP 4 JHD Premier with Jonathan Monkemeyer, Carla Krull & BJ Viau

2011-08-08T23:57:00.000-07:00

Listen to internet radio with HD Support Groups on Blog Talk Radio

Monday, August 8, 2011 – We have an incredible line-up tonight to kick-off the Help 4 JHD Premier with some amazing special guests. Jonathan Monkemeyer from HD Circle is here to give us an update on the JHD Initiative; Carla Krull from Southern California is here to talk about 2011 HDSA Conventionn and BJ Viau, the Hoopathon Guru is here to give us an update on the incredible work he is doing with our HD youth.

UPCOMING SHOWS

AUG 15
The Huntington’s Disease International Film Project with James Valvano 85 countries have now viewed the movie trailer - go to http://www.wehaveaface

AUG 22

2CARE Part II with Dr. Merit Cudkowicz

AUG 29

Diana Dunkelberger, The Immune System and the Role of Cannabinoid Receptors in the Pathogenesis of Huntingtons Disease.

SEP 6

Tuesday, Chris & Lorraine Stiehl, CIRM

SEP 19
COHORT to ENROLL with Joe Giuliano

**DON’T FORGET New Group on Facebook: HELP 4 HD ~ Help HSG Awareness

HELP 4 HD ~ CREST-E Series Part III with Dr. Diana Rosas, MD

2011-08-01T04:06:00.000-07:00

Listen to internet radio with HD Support Groups on Blog Talk Radio

Monday, August 1, 2011 – Our incredible special guest tonight is Dr. Diana Rosas, MD, Director, Center for Neuro-Imaging of Aging and Neurodegenerative Disease. Dr. Rosas and her team have focused primarily on the development of biomarkers for use in the study of neurodegenerative diseases, to better characterize progression, to better understand genotype/phenotype correlations and to apply novel neuroimaging approaches in clinical trials with the overall aim of making them more efficient.

Dr. Rosas’ lab has begun to develop models that may explain clinically heterogeneous phenotypes and variability in disease progression. The current models for both disease prediction and prediction of disease progression are insensitive and inaccurate. Dr. Rosas is planning to expand her efforts to include multi-modal and multi-spectral imaging approaches that promise both more precise measurements and may provide novel and important information on the neural underpinnings of HD and their clinical consequences.

Dr. Rosas is Co-Principal Investigator for the CREST-E Study. CREST-E stands for Creatine Safety, Tolerability, & Efficacy in Huntington’s Disease. The Huntingtons Study Group (HSG), in a partnership between Massachusetts General Hospital (MGH) and the University of Rochester, is conducting a global, multi-center, randomized, double-blind, placebo-controlled clinical trial in individuals 18 years of and older with Huntington’s Disease (HD). Tonight is the third and final episode in the CREST-E Series. Tune in for another amazing episode about CREST-E.

Contact Dr. Diana Rosas
Phone: 617-724-9234
Email: rosas@helix.mgh.harvard.edu
Website: www.massgeneral.org or http://www.huntington-study-group.org/

HELP 4 HD ~ PREDICT HD with Pat Ryan & Anne Leserman

2011-07-24T20:40:00.000-07:00

Listen to internet radio with HD Support Groups on Blog Talk Radio

Monday, July 24, 2011 – Our incredible special guests tonight are Anne Leserman and Pat Ryan from the University of Iowa. Pat is the research coordinator for PREDICT-HD at the UI, and Anne is PREDICT-HD’s recruitment coordinator. PREDICT-HD is an observational study of healthy persons who have been tested for the Huntington disease gene expansion but have not been diagnosed with any symptoms of the disease. Study investigators are identifying the earliest signs of HD so future drug trials can be designed to target those early changes and develop treatments that greatly delay the onset of the disease or prevent it altogether. Study staff is looking to recruit and enroll new participants at 28 sites in the U.S., Canada, United Kingdom, Australia and Germany.

Pat Ryan, MSW, LISW, is the University of Iowa’s coordinator for PREDICT-HD. Ryan leads participants through their annual research visit and oversees all of the other day-to-day aspects that keep PREDICT-HD functioning at the University of Iowa, the study’s flagship site. Ryan has traveled to several national and local HD events to talk with people about PREDICT-HD. She is also a valued member of the study design team, providing insight gained from seeing how participants are able to work with the measures, tests and questionnaires that are given during a PREDICT-HD visit. In addition, she has visited several of the other PREDICT-HD sites, providing training and oversight to fellow PREDICT-HD coordinators.

Anne Leserman, MSW, LISW, is the PREDICT-HD recruitment and retention coordinator and is often the first contact for individuals interested in participating in the study. She works with staff at the University of Iowa and coordinators at the study’s 27 other sites in the U.S., Canada, United Kingdom, Germany and Australia to make the study available to participants who want to make a difference in HD research. She is also the coordinator and social worker for the University of Iowa’s Huntington’s Disease Society of America Center of Excellence and is the 2011 HDSA Patient and Family Service Award honoree.

For more information about PREDICT-HD:
Website: www.preditc-hd.net
Email Anne Leserman: anne-leserman@uiow.edu
Email Pat Ryan: pat-ryan@uiowa.edu
YouTube: PREDICTHD

http://www.blogtalkradio.com/help4hd/2011/07/25/help-4-hd--predict-hd

HELP 4 HD ~ 2CARE Series Part I with Dr. Merit Cudkowicz

2011-07-24T20:33:00.000-07:00

http://www.blogtalkradio.com/help4hd/2011/07/18/help-4-hd-with-dr-merit-cudkowicz-2care-series-part-i

Monday, July 18, 2011 – Our incredible special guest tonight is Dr. Merit Cudkowicz who is the Julieanne Dorn Professor of Neurology at Harvard Medical School. Dr. Cudkowicz's research and clinical activities are dedicated to the study and treatment of patients with Huntington's Disease and amyotrophic lateral sclerosis (ALS).

Dr. Cudkowicz directs the Massachusetts General Hospital Neurology Clinical Trials Unit and is the Principal investigator of the Phase 3, 2CARE clinical trial of Coenzyme Q10 in people with HD. She is an active member of the Huntington Study Group (HSG) and has pioneered clinical trials of new therapies for people with HD and other neurodegenerative disorders.

In conjunction with the HSG consortium, she is a pioneer in promoting and developing more efficient methods of testing new therapies in people with HD.

For more information about 2CARE:
Website: http://www.huntington-study-group.org/
Toll Free North America: 800-487-7671

HELP 4 HD with Douglas Lowell, Find A Cure Panel

2011-07-11T14:10:00.000-07:00

http://www.blogtalkradio.com/help4hd/2011/07/11/help-4-hd-with-douglas-lowell--find-a-cure-panel

Monday, July 11, 2011 – Our incredible special guest is Doug Lowell, president of Find A Cure Panel, a division of Sample Czar. Find A Cure Panel specializes in online patient research for serious diseases including HD, more specifically, finding people to participate in online patient research.

FACP clients are university researchers and pharma. Essentially, FACP is a platform for people to share their opinions and experiences as to their condition and treatment. Our model is based upon partnering with non-profits working in each disease sector and offering them a minimum donation of $X for every completed survey by one of their supporters.

The FACP program has raised tens of thousands of dollars for various non-profits and very much wants to include the HD community in their program.

Website: http://www.findacurepanel.com/
Email: info@findacurepanel.com

HELP 4 HD with Dr. Giovanni Schifitto, CREST-E Series Part II

2011-07-05T11:13:00.000-07:00

http://www.blogtalkradio.com/help4hd/2011/07/05/help-4-hd--giovanni-schifitto-crest-e-series-part-ii-1

Tuesday, July 5, 2011 – Our incredible special guest is Giovanni Schifitto, MD, MS, Associate Professor of Neurology and Imaging Sciences and Associated Co-Director of the Clinical Research Core of the Clinical Translational Science Institute at the University of Rochester. He is trained in Neurology and Experimental Therapeutics. Dr. Schifitto has been primarily investigating the neurological complications associated with HIV infection but he has also been involved with clinical trials in Huntington and Parkinson disease.

Dr. Schifitto has been a member of the Clinical Trial Coordination Center (CTCC) at the University of Rochester since 1994. The CTCC provides data management support for a variety of clinical studies including those conducted by Huntington Study Group (HSG). Currently, Dr. Schifitto serves as the CTCC PI of a large efficacy study of high dose Creatine supplementation (CREST-E) for the treatment of HD conducted by the HSG.

Tonight we are going to talk about the CREST-E Series Part II which stands for Creatine Safety, Tolerability, & Efficacy in Huntington’s Disease. The Huntingtons Study Group (HSG), in a partnership between Massachusetts General Hospital (MGH) and the University of Rochester, is conducting a global, multi-center, randomized, double-blind, placebo-controlled clinical trial in individuals 18 years of and older with Huntington’s Disease (HD).

In this episode we will discuss more details about the CREST-E study, why it takes so long to test a possible treatment and how the FDA decides if a treatment is worthwhile. Most importantly, we want to bring education and awareness about CREST-E and why participation is so vital to the development of a viable therapeutic treatment for Huntington’s Disease. Please tune in for a very educational and informative program with Dr. Shifitto.

HSG website: http://www.huntington-study-group.org/

HELP 4 HD with Stacy Brookhyser

2011-06-27T14:09:00.000-07:00

http://www.blogtalkradio.com/help4hd/2011/06/27/help-4-hd-with-stacy-brookhyser

Monday, June 27, 2011 - Our incredible special guest is Stacy Brookhyser, mother of twins free of HD. She is a super duper proactive HD Warrior who is spreading the word about a new procedure to stop HD in its tracks.

The Procedure: IVF/PGDYes, you can stop Huntington's Disease in the future generations of your family! With the help of skilled medical professionals, YOU have the ability to prevent your children from inheriting HD.

Stacy's website: http://www.hdfreewithpgd.com/
Contact: stacybrook@aol.com
Video:

All About Preimplantation Genetic Diagnosis for Huntington's Disease Families from Gene Veritas on Vimeo.

HELP 4 HD with Martha A. Nance, MD

2011-06-19T21:09:00.000-07:00

http://www.blogtalkradio.com/help4hd/2011/06/20/help-4-hd-with-dr-martha-nance

Monday, June 20, 2011 – Our incredible special guest tonight is

Dr. Martha A. Nance, director of the HD Center of Excellence at Hennepin County Medical Center since 1991. She received her BS from Yale University and her MD from Medical College of Virginia. She completed training in Neurology and in Genetics from the University of Minnesota, and now is an Adjunct Professor in the Department of Neurology at the University of Minnesota.

Dr. Nance wrote The Juvenile HD Handbook and was a co-author of the recently revised Physician’s Guide to HD, both published by HDSA. She has served on the Executive Committee of the Huntington Study Group, and as an investigator on a number of HSG clinical trials. She frequently lectures about HD at local, regional, national, and international patient and professional conferences.

She also serves as the Medical Director of the Struthers Parkinson’s Center at Park Nicollet Clinic, a National Parkinson Foundation Center of Excellence, where she maintains an active clinical and research practice. She graduated two years ago from a career as a soccer mom, and now has much more time to spend in her vegetable and flower gardens!

Contact Information:

Telephone: 612-873-2515

Email: Martha.Nance@ParkNicollet.com OR martha.nance@hcmed.org

Websites:

http://www.hcmc.org

www.hdsa.org

HELP 4 HD with Will Huff & Liani Johnson

2011-06-19T17:34:00.000-07:00

http://www.blogtalkradio.com/help4hd/2011/06/13/help-4-hd-with-will-huff-liani-johnson-1

Monday, June 13, 2011 – Our incredible special guests tonight are Will Huff from Grass Roots Research & Education in Goleta and Liani Johnson, founder of Cannabee Products Inc. in Palm Springs. Both are California medicinal cannabis specialists. We will be talking about the history of Cannabis and the different cultures that have utilized its medicinal properties. We will learn about the cannabinoid system in neuroprotection and how receptors in the brain are activated to relieve symptoms of pain, anxiety and many other conditions.

Only 16 States and DC have enacted laws to legalize medical marijuana and for those who don’t, the MMJ activists are busy educating people about the benefits of this amazing plant. Cannabis has been around for thousands of years, used by cultures around the world for healing, religious ceremonies and everything in between. The plant has been used for clothing, paper, building materials and much more. Tune in for a very interesting and educational program. See some interesting links below:

DR. RAPHAEL MECHOULAM, HEBREW UNIVERSITY, JERUSALEM

http://www.youtube.com/watch?v=-1XlDbTYKbc&feature=related

RUN FROM THE CURE, RICK SIMPSON

http://www.youtube.com/watch?v=0psJhQHk_GI

…CANNABIS RECEPTORS IN THE HUMAN BODY

http://www.youtube.com/watch?v=aVS9QIzTT7k&playnext=1&list=PLC7DE33A6B52E80C1

HELP 4 HD with Steven Hersch, MD. PhD ~ The CREST-E Series Part I

2011-06-06T14:40:00.000-07:00

Steven Hersch, MD, PhD.

http://www.blogtalkradio.com/help4hd/2011/06/06/help-4-hd-crest-e-hd-study-episode-1-of-3

WHY ARE WE STUDYING CREATINE FOR HD & WHY CONSIDER PARTICIPATING IN CREST-E?

Monday, June 6, 2011 – Our incredible special guest is Steven Hersch, MD, PhD, Professor of Neurology at Massachusetts General Hospital and Harvard Medical School; Director, Laboratory of Neurodegeneration and Neurotherapeutics, MassGeneral Institute for Neurodegeneration; Director, New England HDSA Center of Excellence for Huntington’s Disease at MGH; Co-chair, Huntington Study Group; Principal Investigator of the CREST-E study; and Principal Investigator of the REVEAL-HD study.

The HSG is made up of clinical researchers in North America, Europe, Australia, New Zealand and South America, who care for HD patients and families and who are working diligently to combat this disease. Several new research trials are underway or being launched in 2011. We ask you to visit our website for monthly updates and greatly appreciate your time and effort in seeking treatments that make a difference for Huntington disease.

“The central focus of my professional work is to care for families with Huntington’s disease (HD) and to help develop treatments to slow or cure this fatal progressive neurogenetic disorder.” Steven Hersch, MD, PhD

This is the CREST-E Series Part I premiere. CREST-E HD STUDY stands for Creatine Safety, Tolerability, & Efficacy in Huntington’s Disease. The Huntingtons Study Group (HSG), in a partnership between Massachusetts General Hospital (MGH) and the University of Rochester, is conducting a global, multi-center, randomized, double-blind, placebo-controlled clinical trial in individuals 18 years of age and older with Huntington’s Disease (HD).

In this episode we are going to talk about creatine, learn about the differences between creatine and CoQ10 and where the idea came from to study it in HD. We will learn about how clinical studies are conducted and the purpose for studies. Most importantly, we want to bring education and awareness about CREST-E and why participation is so vital to moving research along to develop a viable therapeutic treatment for Huntington’s Disease. Please tune in for an educational and informative program with Steven Hersch, MD PhD.

HELP 4 HD with the A Team

2011-06-06T13:56:00.000-07:00

http://www.blogtalkradio.com/help4hd/2011/05/29/help-4-hd-the-huntingtons-disease-project

Sunday, May 29, 2011 – Our incredible special guests today are The A Team Members James Valvano, Melissa Biliardi, Crista Bordeau, June Brown, Cindy Dupree, Robert Gowing, June Gruber, Lauren Holder, Carla Krull, Clarice Miller, Kimberly Nedoma, Sue Wright and Crystal Martin Zachary.

The film team consists of 13 amazing individuals within the JHD/HD community throughout the USA, England and Scotland. We are seeking other HD organizations to join us. This is the first full length documentary of its kind so it’s important for the international HD community to come together. We will be filming at your locations around the world.

We are reaching out to the international HD community to invite all Huntington’s disease organizations to take part in our documentary: “The Faceless Faces of Huntington’s Disease: I am No Longer a Faceless Face”.

The kick off for our film project is June 17th, 2011 in New York City. To become part of our international film project, contact: James Valvano at our website: www.WeHaveAFace.org or email James at WeHaveAFace@aol.com

Team Hope Walk & Disc Golf Central Coast ~ Great Fun-raiser!

2011-05-24T18:29:00.000-07:00

Headbands for Huntington's donated 100% of their sales.
Thank you girls for all your hard work!

Saturday, May 21, 2011 -The HDSA (Huntington's Disease Society of America) Team Hope Walk & Disc Golf Central Coast fundraiser turned out to be a very fun day with lots of young people who showed up to support our local Huntington's Disease families and the Santa Maria Huntington's Diseases Support Group to raise money and awareness for research and the cure. Our most esteemed Santa Maria dignitaries present were: Sister Janet Corcoran, Vice President of Mission Services at Marian Medical Center; Larry Lavagnino, Honorable Mayor of Santa Maria and Steve Lavagnino, 5th District Supervisor, Santa Barbara County. It was such an honor to have their support and participation Saturday.

Sister Janet and Larry sport a donated golf cart
Thanks to the Santa Maria Country Club!

Many thanks to all for taking time out of their busy weekend to support our efforts and bring awareness of Huntington's Disease and Juvenile Huntington's Disease to our community.

The Opening Ceremony kicked off the walk at 10:00 am with nearly 100 walkers. Sister Janet delivered the invocation. Mayor Lavagnino and Supervisor Lavagnino spoke about the importance of community and giving, even a dollar for such a worthy cause stating, "no one knows whose dollar will be the one to find the cure". We are so fortunate to have such great community leadership.

Joe Chavira (on the far right) and friends.
Beautiful, soulful music!

Our live entertainment lineup: first, Joe Chavira who just recently signed a recording contract with Ocean Records. Look for his newly released single titled "Heaven's Eyes". Then a young band called Liquid Grasshopper graced the stage with new vibes to jump around to.

A Disc Golf tournament preceded the walk at 9:00 am with a pro disc golfer to instruct those who wanted to learn the sport. The walk followed with an inspirational leisurely walk around the Monkey Pond (about 0.8 miles). Signs of encouragement were posted along the route to guide the walkers. Following the walk, lunch was provided by Jersey Mike's Subs for $5 and then a raffle.

The Best Disc Golfers on The Central Coast!

It was a beautiful day for Team Hope Walk & Disc Golf on the Central Coast. Many thanks to all who organized and worked on the day to make it the best possible event for Huntington's.

Team Hope Walk & Disc Golf Central Coast
The Finish Line!

Thanks to all of our sponsors and contributors!

Beach Butlerz

Bonipak

Coca-Cola

Fun Bounce Inflatables

Glaceau Vitaminwater

Healing Hands Massage by LaRay

Help 4 HD on Blog Talk Radio

Jersey Mike's

Kohl's

Life Tiles Jewelry

Lundbeck, Inc.

Macy's

Marian Medical Center

Pan American Underwriters

PCPA Theaterfest

Play It Again Sports

Radisson Santa Maria

Santa Maria Country Club

Sims Physical Therapy, Inc.

Southwest Airlines

Toyota Scion of Santa Maria

YMCA

If we have forgotten to thank anyone, please forgive us. We give thanks to everyone who organized, donated, participated and attended our very first Team Hope Walk & Disc Golf Central Coast 2011.

For more information or pictures, contact:

Melissa Biliardi

805-441-5618

Help4hd@yahoo.com

Team Hope Walk & Disc Golf Central Coast ~ Today at Waller Park

2011-05-21T02:14:00.000-07:00

Saturday, May 21, 2011 - Come and join us today for Team Hope Walk Central Coast. This is our very first walk and disc golf for Huntington's Disease on the CC. Disc Golf register at 8:00 am, play at 9:00 am. Walk register at 9:00 am, walk at 10:00 am. Live entertainment by Joe Chavira. He has an incredible voice and is donating his time to help raise money and awareness of Huntington's Disease. Picnic lunch $5. Raffel and a band called Liquid Grasshoper will also entertain you.

WHERE: Waller Park, Area 1
                3107 Orcutt Rd
                Santa Maria, CA

WHEN:   Saturday, May 21 -
                Register for disc golf at 8:00 am, play at 9:00 am
                Register to walk at 9:00 am, walk at 10:00 am

CONTACT: Melissa Biliardi, 805-441-5618

HELP 4 HD with Jacey Mukka, Jane Mervar & Jonathan Monkemeyer

2011-05-14T16:01:00.000-07:00

The Beautiful Mukka and Mervar Women

Monday, May 16, 2011 – Our incredible special guests today are Jacey Mukka, Jane Mervar and Jonathan Monkemeyer. This episode was produced to honor the memory of all our JH’Dears who have gone before us and to showcase those who are now the legacy of the Juvenile Huntingtons Disease movement. JHD is so different from adult onset that we must take notice; they deserve to have a voice. Most of the research on Huntingtons Disease is directed at the adult population which does not directly apply to those with juvenile-onset HD. We will discuss some of those differences and explore what the JHD Initiative aims to accomplish in this very remarkable episode.

OUR INCREDIBLE SPECIAL GUESTS:
Jacey Mukka – is an amazing young lady who is working very hard to bring JHD into the light. She will share some of her experiences and tell us about the JHD Initiative. (Juvenile Huntington's Disease Initiative). Jacey is our very first JH'Dear on Help 4 HD. We are thrilled to have her premiere on the program. Members of the JHD Initiative are: Martha Nance, MD and Neurogeneticist at the University of Minnesota; Jane Paulsen, PhD, Neuropsychologist at the University of Iowa; Robert Prost, PhD, Biophysicist and Norman Reynolds, MD, Neurologist at Medical College of Wisconsin. Visit http://jhdkids.com/ .Visit Jacey’s Youtube channel at http://www.youtube.com/user/sabraelluver.

Jane Mervar – is Jacey's mum. We will be talking about her experiences with physicians, some of the obstacles and solutions she has found in caring for her Daughters. She is a heroin in my book and has a wealth of firsthand knowledge to share with all of us. She is extremely invested in the JHD Initiative and will give us a better understanding about why we as an HD community need to give our JH'Dears a voice. Reach Jane at jym092000@yahoo.com.

Jonathan Monkemeyer – is a Translational Research Advocate at Hereditary Disease Circle http://www.hdcircle.org/ where he develops synergies between researchers and organizations to help bring cures to patients faster. His wife Sheryl served to improve the lives of patients, but lost her life to Huntington's Disease. We have much to talk about his discoveries and philosophies surrounding JHD and HD in the Hereditary Disease Circle. You can reach Jonathan at jmonkemeyer@hdcircle.org.

HELP 4 HD with Dr. Ira Shoulson, MD

2011-05-14T14:48:00.000-07:00

Listen to internet radio with HD Support Groups on Blog Talk Radio

Monday, May 9, 2011 – Our incredible special guest today is Ira Shoulson MD, Professor of Neurology, Pharmacology and Human Science and Director of the Program for Regulatory Science and Medicine (PRSM) at Georgetown University – new full-time academic positions effective January 1, 2011. Previously, Dr Shoulson was the Louis C. Lasagna Professor of Experimental Therapeutics and Professor of Neurology, Pharmacology and Medicine at the University of Rochester School of Medicine & Dentistry in Rochester, New York. He received his MD degree (1971) and postdoctoral training in medicine (1971-73) and neurology (1975-77) at the University of Rochester and in experimental therapeutics at the National Institutes of Health (1973-75).

Dr. Shoulson founded the Parkinson Study Group (www.parkinson-strudy-group.org) in 1985 and the Huntington Study Group (http://www.huntington-study-group.org/) in 1994 -- international academic consortia devoted to research and development of treatments for Parkinson’s disease, Huntington’s disease and related neurodegenerative and neurogenetic disorders. He has served as principal investigator of the National Institutes of Health-sponsored trials "Deprenyl and Tocopherol Antioxidative Therapy of Parkinsonism" (DATATOP), the “Prospective Huntington At Risk Observational Study” (PHAROS), and more than 25 other controlled multi-center studies. He was formerly a member of the National Institute of Neurological Disorders and Stroke Council and president of the American Society for Experimental NeuroTherapeutics (ASENT) He is currently associate editor of Archives of Neurology and a member of the Institute of Medicine of the National Academy of Sciences. He has authored more than 280 scientific reports.

HELP 4 HD with Jane Kogan HDSA Advocacy

2011-04-29T15:47:00.000-07:00

Listen to internet radio with HD Support Groups on Blog Talk Radio

Monday, May 2, 2011 - Our incredible special guest is Jane Kogan, HDSA Advocacy Manager. She is going to give us the complete explanation of the Huntington's Disease Parity Act: S. 648/HR 718 and we will talk about many facets of HDSA's National Advocacy Program.

May is Huntington's Disease Awareness Month. We are going to kick it off right by talking about a new HDSA campaign "Let's Talk About Huntington's Disease" with Jane Kogan in the house!!

To help or get involved, please call the 800-345-HDSA or go online at http://www.hdsa.org/ or you may contact Jane Kogan directly at JKogan@hdsa.org.

Thank you for your support!

HELP 4 HD with Dr. John La Puma ChefMD

2011-04-21T10:49:00.000-07:00

http://www.blogtalkradio.com/help4hd

Thursday, April 21 from 11:30 am to 12:00 pm PST – Our incredible special guest on HELP 4 HD is Dr. John La Puma, a board-certified specialist in internal medicine and professionally trained chef. We will be talking about ways to help our H’Dear caregivers and community look, feel and live better through healthy eating and living. We will be recording live on April 21 and will re-air this episode on April 28 at 3:30 pm PST.

Dr. John La Puma is the leading practicing physician voice for the importance of food in health care, and a New York Times best-selling author twice, he has pioneered food-as-medicine that's tasty and life-changing. Also an award-winning TV host, he has starred in over 100 episodes of "What's Cooking With ChefMD?" and co-hosted Lifetime TV's "Health Corner" with Joan Lunden.

He has appeared on Today, Good Morning America, Oprah.com and NPR and has been published in Guideposts, Shape, the New England Journal of Medicine, JAMA and the New York Times. He developed recipes for Dr. Oz and Roizen's New York Times best-seller You the Owner's Manual. His PBS Special “Eat and Cook Healthy with Dr. John La Puma” premiered in March and will be shown nationwide on PBS in June, so check your local listings.

ChefMdCo-Founder /Author · Santa Barbara, California
ChefMD.com aims to make eating healthy easy, with my recipes, Lifetime TV videos, and FB posts.

Santa Barbara Institute for Medical NutritionPhysician-Nutritionist and Coach · Santa Barbara, California
I see patients with the Institute for weight loss and lipid control with lifestyle change.

Connect with Dr. John La Puma at http://drlapuma.com or be his fan at http://facebook.com/drjohnlapuma

HELP 4 HD with Phillip J. Hardt

2011-04-17T23:43:00.000-07:00

By Melissa Biliardi

http://www.blogtalkradio.com/help4hd

Monday, April 18, 2011 – Our incredible special guest today is Phillip J. Hardt, BA, MA, Huntington’s Disease Advocate, Author and Diplomat from Phoenix Arizona. Phillip was HDSA Person of The Year, 2001 and one of the ones who coined the phrase Phd, “The P is capitalized because the person is more important than Huntington’s Disease”. Some people may think he is a controversial and outspoken character, but I say we need more fellows like Phillip to stir the soup a bit.

Phillip has run 3 humanitarian missions to Medellin, Bogota and Juan de Acosta in Colombia with supplies and equipment to help those H’Dears in need and is working on identifying and correcting genealogies relating to the lineage of HD. He has also served as the Chairman of the HDSA Arizona Affiliate for 8 years and organized and directed its annual HD and JHD family-centered retreat in Prescott for 6 of those years. But, what I find most interesting is the work he is doing right now helping people with HD get off the street and get benefits.

When I was training to be facilitator for our local support group, several documents I turned to for guidance were written by Phil Hardt: Huntington’s Disease At-Risk Preparation Checklist, Zero Suicide Campaign and 14 Changes That Could Signal Concern, to name a few.

In another document he writes, “I believe we are overlooking many HD-affected individuals and families who are ‘bleeding in the trenches’ at this very moment while focusing primarily on finding a cure!”

His compassion and concern for Phds is to be admired, but his common sense advice and communication with the HD community will forever change their lives, for the better. Thank you Phil for your unwavering dedication to helping our H’Dears!

HELP 4 HD ~ 411 with James Valvano

2011-04-10T18:15:00.000-07:00

Monday, Arpil 11, 2011

http://www.blogtalkradio.com/help4hd/2011/04/11/help-4-hd--411-with-james-valvano

Monday, our incredible special guest is the amazing James Valvano whom we all know and love as a true HD warrior. He has invited us into his psyche with his book One With The Blue and brought us out of the proverbial closet with his films, The Faceless Faces of Huntington's Disease and The Faces of Huntington’s Disease: I Am No Longer a Faceless Face, by igniting the HD community all over the world on Facebook and Youtube.

James is so passionate and inventive about communicating with our H’Dears that he has now created James Talk Video, a weekly video blog and James Talk Info Bits, which is all about what’s happening NOW in the HD world. If you have ever heard the term, "I have Huntington's Disease, but Huntington's Disease doesn't have me"... well, now you know where it came from... and now you know it’s every bit true about James Valvano!

He just got back from Jacksonvill Florida and the Team Hope Walk with the Mundys and he has some very exciting news about the second phase of his film project, which will draw the entire HD community together. This is a new dawning for the HD world with James Valvano at the helm. Thank you James for your unstoppable commitment to helping all of our H’Dears.

HELP 4 HD with Terry Tempkin ~ UCD COE 10th Anniversary Show

2011-04-04T02:20:00.000-07:00

Monday, April 4, 2011

http://www.blogtalkradio.com/help4hd/2011/04/04/help-4-hd-with-terry-tempkin-ucd-coe-10th-anniversary-show

Happy 10^th Anniversary to everyone at the HDSA Center of Excellence at the UC Davis Medical Center in Sacramento! Terry Tempkin, Co-Director and Nurse Practitioner extraordinaire will be our incredible special guest this week. She is going to share some of their Center’s accomplishments in the last decade and what’s planned for the next 10 years. Thank you for 10 awesome years of service for our HDears!

In 2001, the Huntington's Disease Society of America (HDSA) named UC Davis a center of excellence (COE), recognizing its expertise in clinical care for Huntington's disease patients. Directed by associate physician Vicki Wheelock and nurse practitioner Terry Tempkin, the multidisciplinary team also consists of a full-time social worker, psychiatrist, physical therapist and genetics counselor.

“Hiring Terry was the smartest move I made in developing our HD program,” Wheelock said. The clinic's staff now includes a nurse practitioner, social worker, physical therapist, genetics counselor and research assistant, and recruitment of a second psychiatrist is under way.
— neurologist Vicki Wheelock

The clinic offers predictive testing, diagnosis and management of symptomatic Huntington's disease, nursing home outreach and community outreach. Patients and families can also participate in clinical trials sponsored by the Huntington Study Group. Nearly half of the clinic's HD patients are enrolled in clinical trials. UC Davis has been selected as one of 11 sites for the first clinical trial of neuroprotective therapy in healthy individuals who have inherited the gene for Huntington's disease.

Much of the cost of operating the Huntington’s disease clinic at the medical center is underwritten by the Joseph P. Roberson Foundation and the Charles and Margaret Pue Charitable Trust.

For more information, call (916) 734-6277 or visit the Web.

HELP 4 HD ~ March 4 HDSA with Jane Kogan, Melanie Nagy, Jules Greenwald & Tina Hellum

2011-03-26T22:53:00.000-07:00

Monday, March 28, 2011

http://www.blogtalkradio.com/help4hd/2011/03/28/help-4-hd-march-4-hdsa-with-jane-kogan-jules-greenwald

This is the final show in the March 4 HDSA series. We have brought you as much information about the Huntington’s Disease Society of America as 120 minutes of live broadcasting could bring. But, wait… there’s more. You are invited to visit www.hdsa.org for new and upcoming incredible programs, announcements and activities. May is HD Awareness month and HDSA is pulling out all the stops with events and special campaigns. So, visit their website daily and stay well informed about everything they are doing for our HD community. From research and family services to education and chapter development, the Huntington’s Disease Society of America is here to stay and here to help.

We have four incredible special guests from HDSA tonight. First, Jane Kogan, Manager, Advocacy, Programs & Services will be talking about a very hot topic: The Huntington’s Disease Parity Act with Melanie Nagy, Board Member for IN Chapter and Indiana Chapter Advocacy leader. Then we’ll get to meet Jules Greenwald, Director of Development. Without Jules we would not have growth and advancement at HDSA. Finally, Tina Hellum is North Florida Walk Chair.

HDSA chapters, affiliates, regions, social workers, and support groups work in tandem with the Centers of Excellence to increase awareness about Huntington’s Disease and raise funds for research, education and family services. HDSA Centers of Excellence provide medical and social services to those affected by Huntington’s Disease and their families, while a toll free helpline (800-345-HDSA) and extensive national website (www.hdsa.org) help to provide access to information and services.

To help or get involved, please call the 800-345-HDSA or go online at http://www.hdsa.org/. Thank you for your support!

HELP 4 HD ~ March 4 HDSA with Fred Taubman

2011-03-23T14:24:00.000-07:00

Monday, March 21, 2011

http://www.blogtalkradio.com/help4hd/2011/03/21/help-4-hd-march-4-hdsa-with-fred-taubman-dr-jang-ho-cha

This month is March 4 HDSA. We will be spotlighting the largest non-profit volunteer organization of its kind to explore every aspect of their programs and services which they provide to our HD community. HDSA was founded in 1967 by Marjorie Guthrie, the widow of Woody Guthrie, an inspirational musician and story teller who lost his battle with Huntington's Disease at age 55. Its network of resources and referrals are unmatched by any other HD organization.

Our incredible special guest tonight is Fred Taubman, Director of Marketing Development & Communications at HDSA National in New York. Fred is in charge of marketing strategies to increase awareness and build fundraising dollars to support research, resources, treatment and care for HD families as well as website and marketing standards for all HDSA materials and communications. Awesome job, Fred!

This is the third show in the March 4 HDSA series. Each Monday we are showcasing another segment of the largest non-profit volunteer organization of its kind for the HD community. We will be exploring more of HDSA's remarkable website and talking about different ways to utilize all that HDSA has to offer. Stay tuned for two more amazing shows and let's March 4 HDSA!! To learn more about HDSA and to get involved, visit their website at: http://www.hdsa.org/ or call (800-345-HDSA).

Invitation to Participate in HSG Communications Group

2011-03-17T07:30:00.000-07:00

Thursday, March 17, 2011
By Melissa Biliardi

I was honored to have been asked to speak at the HSG, HD Communications Group on Thursday, March 17th. to talk about HELP 4 HD and how we may utilize the program to share with our HD community about what is happening in the world of clinical and observational trials. In an effort to help bring education and awareness about clinical trials to our HDears, it was proposed that HSG and it's Principal Investigators come on the program to tell us about the work they are doing.

HD Communications Group is a collaboration of many brilliant world-renowned medical professionals, scientific researchers and administrators whose mission is to bring better care and treatments for our HDears, provide updates on HSG Clinical Trials and HD related events.

ABOUT HSG

The HSG (Huntington's Study Group) is made up of clinical researchers in North America, Europe, Australia, New Zealand and South America, who care for HD patients and families and who are working diligently to combat this disease. Several new research trials are underway or being launched in 2011. Please visit their website for monthly updates. They greatly appreciate your time and effort in seeking treatments that make a difference for Huntington's Disease. Please visit their website: http://www.huntington-study-group.org/.

Look for HELP 4 HD programing with HSG and current clinical trials in the very near future.

Melissa Biliardi
www.blogtalkradio.com/help4hd
help4hd@yahoo.com

HELP 4 HD ~ March 4 HDSA with Debra Lovecky

2011-03-12T01:52:00.000-08:00

Monday, March 14, 2011

http://www.blogtalkradio.com/help4hd/2011/03/14/help-4-hd-march-4-hdsa-with-debra-lovecky

This is the second show in the March 4 HDSA series. Our incredible special guest tonight is Debra Lovecky, Director of Education Programs & Services at HDSA National. We will be showcasing HDSA (Huntington’s Disease Society of America), the largest non-profit volunteer organization of its kind for the HD community. We will be talking about some new features on the website and other wonderful programs:

+ HDSA National Convention
+ The Physician’s Guide
+ Caregiver’s Corner
+ Support Group Newsletter
+ Online Forum
+ Online Publications
+ HDSA Diplomat Program
+ Lundbeck Educational Grants
+ Lundbeck Educational Events

Please join us today and each Monday this month for some very exciting new information about what’s happening at HDSA. To learn more about HDSA and to get involved, visit the website at: http://www.hdsa.org/ or call (800-345-HDSA).

HELP 4 HD ~ March 4 HDSA with Louise Vetter & Nancy Rhodes

2011-03-05T05:17:00.000-08:00

Monday, March 7, 2011

http://www.blogtalkradio.com/help4hd/2011/03/07/help-4-hd-march-for-hdsa

Each Monday we will be showcasing another segment of the largest non-profit volunteer organization of its kind for our HD community. Our incredible special guests are Louise Vetter, CEO and Nancy Rhodes, Director of Field Development & Operations at HDSA National in New York. The idea is to explore every aspect of HDSA’s programs and services. HDSA was founded in 1968 by Marjorie Guthrie, wife of folk music legend Woody Guthrie who lost his battle with Huntington's Disease at age 55. Its network of resources and referrals are unmatched by any other HD organization.

HDSA Centers of Excellence provide medical and social services to those affected by Huntington’s Disease and their families, while a toll free helpline and extensive national website help to provide access to information and services. HDSA chapters, affiliates, regions, social workers, and support groups work in tandem with the Centers of Excellence to increase awareness about Huntington’s Disease and raise funds for research, education and family services.

OUR GOAL for March 4 HDSA is to tap into these extraordinary resources and inform you about what is available NOW to help our HDears. It's great to know we have an incredible wealth of help right at our fingertips. Thank you HDSA for your dedication, support and commitment to help all of our HDears. Tune in each Monday this month and let’s March 4 HDSA!! To learn more about HDSA and to get involved, visit their website at: (www.hdsa.org) or call (800-345-HDSA).This is the first show in the March 4 HDSA series.

HELP 4 HD Mow Show with Jayson Mikula & Mike Ratel

2011-02-25T17:38:00.000-08:00

Monday, February 28, 2011

http://www.blogtalkradio.com/help4hd/2011/02/28/help-4-hd-mow-show-with-mike-ratel

In honor of International Rare Disease Day, today's show is dedicated to the Mikula family. It's about the documentary film, "On Your Mark, Get Set, MOW!" and how the sport of lawn mower racing is on the “cutting edge” in the battle against Huntington's disease. Every year in Sparta, MI the Mikula family who have lost six members to the disease host a United States Lawn Mower Racing Association (USLMRA) national points race to raise awareness of the disease and money for the Huntington's Disease Society of America (HDSA). The entire lawn mower racing community as well as businesses and media from Western Michigan rally around the Mikula family each year for the fundraising race. Huntington's disease is a hereditary neurodegenerative disorder which 200,000 Americans are at risk for. Part of the film explores the Huntington's Disease Parity Act of 2009 (HR 678) and how it will help those suffering from the terminal disease if passed and made into law.

Dubbed the “Poor man's NASCAR” lawn mower racing has offered an opportunity for middle class motor sports enthusiasts to participate in accessible and affordable racing. While people can get involved in the sport for a few hundred dollars the top racers chasing the national championship often spend thousands on their “mowchines”. Although the racers come from a wide range of socioeconomic backgrounds they all share the ability to tweak small engines for maximum performance sometimes achieving speeds of over 50 MPH during a race. The races are held at locations throughout rural America offering racers the opportunity to compete locally or at the national level sometimes involving driving times of up to twenty hours to get to a race. There are no cash prizes in organized lawn mower racing, instead the racers compete for plastic trophies and bragging rights. Many times gate receipts from the races are donated to local charities. The charities range from volunteer fire houses to efforts to find cures for debilitating diseases which have affected the racer's lives in one way or another.

Watch the trailer http://www.mowermovie.com/, Producer/Director Mike Ratel

HELP 4 HD with James Valvano

2011-02-19T16:25:00.000-08:00

Monday, February 21, 2011

http://www.blogtalkradio.com/help4hd/2011/02/21/help-4-hd-with-james-valvano

We have a very special show today with James Valvano, a super creative published author and film maker. His book “One With The Blue” has completely sold off the shelf and now his film “The Faceless Faces of Huntington’s Disease” has created such a magnanimous buzz in the HD community all over the world and on Youtube. If you have ever heard the term “I have Huntington’s Disease, but Huntington’s Disease doesn’t have me”… well, now you know where it came from, James Valvano.

He is an amazing super HD hero in my book as he is bringing into the light his true feelings about what it’s like to live with Huntington’s Disease. Once hidden beneath a mask, the stigma of HD is now revealed in his film “The Faceless Faces of Huntington’s Disease”.

We are going to get to know James intimately and why he made the film. He wants to discuss the word/concept of stigmas and his interpretation of how he has exposed the true stigma of HD. He is going to tell us what he plans to do next for Phase II of the film. We have some big surprises in this show, so don’t miss it!

Contact James:
NoLongerFaceless@groups.facebook.com
WeHaveAFace@aol.com

Facebook/James ValvanoFacebook/The Faceless Faces of Huntington's Disease - In Review

Find James' films:

HELP 4 HD with Jonathan Dickinson

2011-02-11T23:09:00.000-08:00

Monday, February 14, 2011

http://www.blogtalkradio.com/help4hd/2011/02/14/help-4-hd-with-jonathan-dickinson

This show is dedicated in loving memory to Peter Dickinson who has since passed on to the Heavenly realm. Join us for a fantastic show with Jonathan Dickinson who is wrapping up this courageous epic film titled, “Father Spirit”. They are traveling by motorcycle through India and the Himalayas to capture their last father-son adventure together on film.

Father Spirit is a feature documentary that follows Jonathan and his father as they journey through India. Peter must ultimately lose his battle against Huntington’s, but Jonathan enables a richer life for them where every moment can be lived to its fullest.

This is a beautiful, artful and uplifting illustration of immense love and trust between the two; Jonathan now taking on the roll of father, tending to his “Pops” as they travel through this richly beautiful, yet sometimes stark land, fraught with intrigue and danger around every turn. Together they experience the trip of their lifetime and offer it up for the whole world to see.

More radio links: http://withgoodreasonradio.org/2011/02/father-spirit/

Don't miss this show and please view Jonathan's teaser clips of "Father Spirit".

Visit his website: http://fatherspirit.org/

HELP 4 HD with Audrey Watson

2011-02-05T00:49:00.001-08:00

Monday, February 7, 2011

http://www.blogtalkradio.com/help4hd/2011/02/07/help-4-hd-with-audrey-watson

This is going to be a very exciting show with Audrey Watson. She is an ultra marathon runner for Huntington's Disease awareness and fundraising. Whether she is running the Himalayan 100 Stage Race in October 2010, the Avalon 50 Mile Run at Catalina, the Bulldog 50K Ultra Run at Malibu Creek or the PCT 50 Mile Trail Run, Audrey is always anticipating her next step.

She is an unstoppable HD fundraising advocate and she is going to tell us what her next plans are with a sponsor, a new blog and how this all ties in with her desire to support our HD community. It is through her contagious enthusiasm and dedication to run for HD that OUR energy is renewed to keep fighting the HD fight.

Thank you Audrey, our hearts are with you on each and every run!

Her websites are:
http://www.firstgiving.com/fundraiser/audrey-watson/san-diego-100-mile
http://www.firstgiving.com/audreywatson
http://himalayan100milesstagerace.blogspot.com/
http://adventuresofultrarunning.blogspot.com/
http://bulldog50kultrarun.blogspot.com/
http://pct50miletrailrul.blogspot.com/

HELP 4 HD with Dan Brennan

2011-01-28T00:12:00.000-08:00

Monday, January 31, 2011

http://www.blogtalkradio.com/help4hd/2011/01/31/help-4-hd-with-daniel-brennan

Our special guest tonight is Daniel Brennan who joined Lundbeck in July 2009, after Xenazine had been developed and launched in the USA. He is Vice President and General Manager of Neurology Franchise at Lundbeck and now leads the group of people that distribute, provide information, and support Xenazine as well as other nervous system therapies for rare diseases.

He enjoys meeting people in the HD community to better understand the impact that this disease has on people and their families, as well as learn what they can do better as a company as they continue to make the medicine available to the public.

Lundbeck has become very involved and dedicated to Huntington's Disease and recently announced their commitment to research for HD that may halt or slow the progression of the disease. He’d like to make sure that he understands your concerns and also try to provide information that may be helpful in your understanding of Lunbeck’s actions and activities.

http://www.lundbeckinc.com/

HELP 4 HD with Dr. LaVonne Goodman

2011-01-22T19:53:00.000-08:00

http://www.blogtalkradio.com/help4hd/2011/01/24/help-4-hd-with-dr-lavonne-goodman

Monday, January 24, 2011

Our special guest tonight is Dr. LaVonne Goodman, an internist and patient advocate who decided to help a Seattle clinic recruit patients with Huntington’s Disease (HD) and was wildly successfully at it. Her secret, she says, is having a personal relationship with many, many patients. Her husband died of HD at age 36.

Since then she saw HD patients and led support groups, building relationships as a friend to families dealing with HD. She has kept a close watch on the clinical studies field, but all studies were observational in nature and not designed to alter the course of their disease or symptoms.

Then in 2010, she heard that the first compound designed for motor improvement in HD patients was entering phase II trials. After realizing the Seattle area was not involved, she pressed the Huntington’s Study Group who connected her with a Colorado physician who had just moved to Seattle to join the Evergreen Neuroscience Institute. The two decided to work together on the trial with Goodman handling recruiting. Because of her long standing relationships with HD families, they were literally waiting at the door. Evergreen emerged as the third best recruiter for the trial, among very established centers.

She emphasizes, the personal angle is key. Clinical research literacy is low because people don’t know much about clinical trials, they are afraid of them. She stresses that the conversation about clinical trials should come from someone they trust from their community, not a lecture from a stranger. Goodman is staying active in recruiting for studies and is currently working on amassing a cohort to be used for a registry for biomarker studies. She says it is her passion to try to speed that along because there was nothing for the last generation, but for this generation, it could be different.

Please check our her website http://hddrugworks.org
Huntington's Disease Drug Works (HDDW) founded by LaVonne and Nathan Goodman in 2004 has evolved over the years. At present the focus is providing information on present treatment options for Huntington's disease that include:

Drugs that are presently available and used (with variable success) for treatment of symptoms that include chorea, depression, anxiety, irritability, agitation, psychosis, apathy and rigidity.
Supplements and life-style modifications that are available that may be useful treatments for neuroprotection.

We will also provide information on drug development and clinical trials:

Reports on drug candidates and their sponsoring companies.
Updates on progress in finding biomarkers.
Clinical trial information and education.

We hope that this information is helpful to the Huntington community, and welcome your comments, critiques, and suggestions.

HELP 4 HD with Kimberly Gibson & James Valvano

2011-01-14T09:36:00.000-08:00

Kimberly Gibson & James Valvano

Monday, January 17, 2011

http://www.blogtalkradio.com/help4hd/2011/01/17/help-4-hd-open

Our special guests tonight are Kim Gibson (repeat performance) and James Valvano. We will be talking about the Faith & Hope Society again, a new addition blog to their website called “James Talk” by James Valvano and what they are adding to their website repertoire to make it more interesting and interactive. It was such a pleasure having Kim on the show December 27 that we just had to have her back again.

James is a published author, see: “One With the Blue”, a fictional, but with some actual experiences written-in story which depicts the trials and tribulations he experiences before the disease (Huntington's Disease) takes his life. James takes you on a delicate and intimate journey expressing the physical, emotional, and psychological challenges an individual with HD experiences.

See this link and order your copy: http://www.publishamerica.net/product95982.html.

Please join us for this fascinating collaborative show!!

HELP 4 HD with Lisa Kjer, MSW

2011-01-07T20:55:00.000-08:00

Monday, January 10, 2011

http://www.blogtalkradio.com/help4hd/2011/01/10/help-4-hd-with-lisa-kjer

Our special guest tonight is the amazing Lisa Kjer. She is a Master of Social Work for the HDSA Center of Excellence located in the Lawrence J. Ellison Ambulatory Care Center at the UC Davis Medical Center in Sacramento, CA and works with 200+ families who come to see the center's dedicated neurologist. Lisa was hooked on social work at a very young age and has devoted her life to the helping professions.

In 2001, HDSA named UC Davis a center of excellence, recognizing its expertise in clinical care for Huntington's disease patients. Directed by associate physician Vicki Wheelock and nurse practitioner Teresa Tempkin, the multidisciplinary team also consists of full-time social worker (Lisa Kjer), psychiatrist, physical therapist and genetics counselor. The clinic offers predictive testing, diagnosis and management of symptomatic Huntington's disease, nursing home outreach and community outreach. Patients and families can also participate in clinical trials sponsored by the Huntington Study Group.

We will be asking Lisa some very pertinent questions about what to do if we suspect we are affected by HD, are there confidential testing options and what are some of the mental and physical aspects of HD to plan for? She will explain how the HDSA center of excellence can help our families with information and how she can link us to community resources. She encourages a wonderful support system for all of our HD families. Thank you Lisa for your exemplary work!

HELP 4 HD with Gina McGahen Becker

2011-01-02T19:07:00.000-08:00

Monday, January 3, 2011

http://www.blogtalkradio.com/help4hd/2011/01/03/help-4-hd-with-gina-becker

Our incredible special guest tonight is Gina McGahen Becker who is doing great work to bring awareness to her community about HD. When I asked her to tell me something about herself, she immediately started telling me about how much she loves her friend and what an honor it is to be advocating for her. Here is a letter she sent to me explaining why she is doing what she is for her friend…

“My name is Gina McGahen Becker and is it my goal to bring the community’s attention to Huntington’s Disease. My friend since childhood, Angie Sellars Elkins, was diagnosed with this genetic disease in February of 2004. What makes this even more tragic is she was diagnosed after her sister, Anita Sellars Jackson, who is seven years her junior. Angie and I have exchanged birthday cards without fail for longer than I can remember. This year, when my birthday came around, there was no card. I had that feeling you get in your gut when you know something isn’t as it should be and you don’t want to deal with it. Then two weeks later, the card arrived. It was obvious from her handwriting that the disease had progressed from the last time we had exchanged cards. It was impossible for me to continue to stick my head in the sand and pretend this wasn’t happening. It is my hope that through any means possible, her friends, family and I can bring attention to this disease so that Angie and Anita’s children might not have to face the same obstacles."

Gina and Angie have been friends since the first grade. They are now 42 years young.

It is through loving and caring action-orientated friends of HD families that the world will be notified of the devastation and destruction that Huntington’s Disease brings. The advocate is their only voice. We definitely need more people like you Gina to be our HDears’ warriors to fight the battles and to win the hearts of all who will listen. Thank you Gina! You are an awesome advocate and friend.

HELP 4 HD with Kimberly Gibson

2010-12-26T01:29:00.000-08:00

Monday, December 27, 2010

http://www.blogtalkradio.com/help4hd/2010/12/27/help-4-hd-with-kimberly-gibson--faith-hope-society

Monday night our special guest is KIMBERLY GIBSON. She is gene positive for Huntington's Disease and grew up surrounded by HD. Like so many HD families, she has helplessly watched as the people she loved died in front of her. As the caregiver to her grandfather at age four and her mother's caregiver by the time she was 22, she had almost no support and nowhere to turn.

That's why Kimberly founded the Faith & Hope Society, a non-profit organization with a few visions in mind, but mostly because, in the words of her aunt who is in the late stages, "No one should live through HD alone". She is proud to have the Faith & Hope Society and to be sharing her journey with you.

The organization was formed exclusively for charitable and educational purposes. Their goal is to educate the public, raise awareness about Huntington's Disease, facilitate charitable events and to support present and future activities of geographically distant non-profits that share the same vision. FHS is funded by way of contributions from individuals, non-profit organizations, government agencies and corporations.

The Faith and Hope Society is dedicated to enrich the lives that have been touched by Huntington's Disease. Their mission is to strengthen the Huntington's community through fund raising, spreading awareness, and individualized assistance to victims and their families.

Check out the Faith & Hope Society website: http://www.faithandhopesociety.org/iety.org

HELP 4 HD with Dr. Jan Nolta

2010-12-17T00:58:00.000-08:00

Monday, December 20, 2010

http://www.blogtalkradio.com/help4hd/2010/12/20/help-4-hd-with-dr-jan-nolta

This show is going to blow you away! Our special guest is the esteemed JAN A. NOLTA Ph.D., Director Professor, UC Davis Stem Cell Program and Institute for Regenerative Cures. She and many other amazing scientists have been working day and night to bring us the first HD Stem Cell Clinical Trial. This is History in the making for the potential CURE of Huntington's Disease!!

Dr. Nolta joined UC Davis in 2006 after serving for five years as scientific director of the cell processing and gene therapy Good Manufacturing Practice (GMP) facility at Washington University School of Medicine in St. Louis. Her laboratory uses human stem and progenitor populations to examine their recruitment to areas of tissue damage in immune deficient mice. Her research is focused on developing improved stem cell therapies for treating neurodegenerative diseases including Huntington’s and Parkinson’s diseases and ALS, Liver disease, lysosomal storage diseases, and peripheral vascular disease. Her group focuses on “bench to the bedside” research, and she has been involved in numerous clinical trials of gene and cell therapy.

The Institute for Regenerative Cures is located in a 109,000 sq ft facility in Sacramento. Renovation of the old California State Fair building was made possible through a grant from the California Institute for Regenerative Medicine (CIRM), for $20 million of the $63 million dollars total to complete all three phases of the renovation. Dr Nolta is published in over 100 peer-reviewed manuscripts and numerous books. Her most recent book “Genetic Engineering of Mesenchymal Stem Cells” is available on her website. Visit the JAN NOLTA LAB 2010 online for more information about what she is doing for Huntington’s disease research. http://jannolta.com/

HELP 4 HD with Chris Furbee

2010-12-12T00:57:00.000-08:00

Monday, December 13, 2010

http://www.blogtalkradio.com/help4hd/2010/12/13/help-4-hd-with-chris-furbee

Our special guest this show is the amazing and dynamic CHRIS FURBEE. Chris was born April 30, 1966 and tested positive (43 repeats) for the Huntington's Gene in 1996. He recently came to terms that he is in the early stages of Huntington's Disease. He has been working on a documentary about his mom and life with Huntington's Disease. The story follows him from his decision to go back home to West Virginia to visit his mom for 2 months to see if she could continue living on her own or if he needed to place her into a nursing home.

The following year he went to get the genetic test and found that he did inherit the gene from his mom. The story does not end there as he has chosen to empower himself by speaking to medical students at UCSF and Stanford. He decided that he had to live a positive life and educate as many people about HD. Chris has an annual festival event called "Furb on the Green" where he gets to play in his band, Ik Nak Fu and showcase many other talents. The proceeds are used to fund his documentary “Huntingtons Dance”.

Chris has been featured many times in the media and has received numerous honors for his advocacy and work for the Huntingtons disease cause. Visit Chris Furbee’s website: http://www.huntingtonsdance.org/. His website is to help educate people about Huntington's Disease and promote his documentary. And please, don’t forget to donate while you are there. We all need his documentary to be completed as a professionally produced and very poignant depiction of what the HD life is like. What grabbed my attention on his website was the Memorial Page. He has a dedication page for his mother Rosemary Shockey, which has some pictures of her and paintings she did. Additionally, he honors many other families whose loved ones have gone before.... Please join us for this very special show!! Talk to you soon!!

HELP 4 HD with Dr. Robert Pacifici

2010-12-05T01:32:00.000-08:00

Listen to internet radio with HD Support Groups on Blog Talk Radio

Dr. Robert Pacifici

Monday, December 6, 2010 - BJ Viau will host this special show on Monday, December 6. Our Special guest is Dr. Robert Pacifici who is Chief Scientific Officer from CHDI Foundation. This will be an awesome show!

Dr. Pacifici will talk to us about CHDI, what their goals are as a foundation, the future outlook in HD research and how CHDI and HD families can achieve some common goals together. Welcome to HELP 4 HD Dr. Pacifici!!

CHDI (Cure Huntington's Disease Initiative) is continually developing methods, tools, and other resources for all researchers working on Huntington's disease (HD). In addition to currently available reagents, protocols, and animal models, they are developing a digital platform, called Crossroads, for scientists investigating possible targets and compounds. This tool will be released to the HD research community within the next year.

** See CHDI Link: http://www.highqfoundation.org

HELP 4 HD with Mike Brown

2010-12-02T00:47:00.000-08:00

Monday, November 29, 2010

http://www.blogtalkradio.com/help4hd/2010/11/29/help-4-hd

SPECIAL GUEST: Mike Brown.... Mike and Allie are very special friends of ours from the California Central Coast HD Support Group in Templeton. Mike started the first Huntington's Disease support group on the California Central Coast in 2007. He will talk to us about the clinical trial his wife Allie has participated in. The Horizon clinical trial of Dimebon is a global collaborative multi-center, randomized, double-blind, placebo-controlled study in individuals with mid-to-moderate Huntington's disease. That's a mouth-full. Mike will explain how this clinical trial came about and what stage they are in. Interesting stuff!! If we are ever to find a cure or viable treatment for Huntington's disease we MUST participate in clinical trials.

* See California Central Coast Support Group tab on this blog for meeting dates and times and Mike Brown's contact information.

HELP 4 HD with Matty Ellison

2010-11-19T01:03:00.000-08:00

Monday, November 22, 2010

http://www.blogtalkradio.com/help4hd/2010/11/22/help-4-hd

SPECIAL GUEST: Matty Ellison from the UK….SUBJECT: Matty is working hard on a new project called the Huntington’s Disease Youth Organization (HDYO). HDYO will support young people from the HD community all over the world.

Launching in late 2011, HDYO will be the first organization to specifically support young people from the HD community. The HDYO website will provide support, educational information and videos about HD, stories of young people’s experiences with HD and support forums will all be provided. It will also be available in a variety of languages, providing a place for young people from all over the world to connect and receive much needed support.

Why do young people from an HD family need support? HD is a devastating neurological disorder. The affects of HD on a family are enormous. Young people in particular face a tough time often having to watch a parent slowly deteriorate over many years. Many young people from the HD community provide care for their parent. Most will have lost other family members to HD. Due to psychological issues sometime caused by HD some young people may experience physical and emotional abuse. As a result, some young people may live outside the family home with relatives or even a foster family. Young people from an HD family have a 50% chance of inheriting HD from their parent. That knowledge is something young people at risk of HD have to come to terms with. To say that young people in an HD family have to be strong…is an understatement.

TUNE IN to hear Matty from the UK talk about this wonderful new organization that will be a tremendous help and resource for our young people from the HD community. Thank you Matty for all your hard work!

Copy this link into your browser. http://www.youtube.com/watch?v=Hk021-xvhts

HELP 4 HD with Lauren Holder and Karla Gurangus

2010-11-19T00:51:00.000-08:00

Monday, November 15, 2010

http://www.blogtalkradio.com/help4hd/2010/11/15/help-4-hd

SPECIAL GUEST: Lauren Holder (on the right), talks about H.R. 678 (The HD Parity Act). She is an HD activist with the "PASSION FACTOR" and she is on a mission to educate our government about how critically important H.R. 678 is to all of our HD families. * H.R. 678 is a Bill before Congress to require the Commissioner of Social Security to revise the medical criteria for evaluating disability in a person diagnosed with Huntington’s Disease and to waive the 24-month waiting period for Medicare eligibility for individuals disabled by Huntington’s Disease.

With so many challenges facing us in finding Social Services, we need more extraordinary people like Lauren to join our cause. Go Lauren! She is also a volunteer for the Huntington’s Disease Society of America and the National Youth Alliance. She has organized several events to raise awareness and money to benefit our youth who are affected by HD. Lauren, you are a dynamo!

SPECIAL GUEST: Karla Gurganus (on the left), is Advocacy Chair for Huntingtons Disease Society of America, the National Youth Alliance (NYA). She talks about how important it is to get involved with advocacy to create awareness of Huntingtons Disease in order to find a cure and change the future for all those who are gene positive and still at risk. She has a huge heart for the mission at hand as her dad had HD.

We give thanks for two very special ladies and this informative and poignant show. We will want you both to visit us again, very soon!!

HELP 4 HD Premieres on BTR - Nov 8 at 3:30 pm PST

2010-11-06T18:23:00.000-07:00

HELP 4 HD premieres on Blog Talk Radio, Monday, November 8 at 3:30 pm PST (California time). Click on the link and "Follow" the show. You will get email reminders so you can listen or call in to the show. This is the first show of it's kind, so please send this link to all of your contacts. This will be a weekly show and I am accepting inquiries for guests to present at our following shows.

I am a fulltime mom, caregiver and advocate for my son who has Juvenile Huntington's Disease. As the founder of an HD support group and non-profit organization, I’ve made it my mission to help him and others who are affected by HD, promote awareness and education to everyone who will listen, or as some may say, back into a corner.

HELP 4 HD PREMIERES
MON, NOVEMBER 8, 3:30 PM PST

We know that HD is a genetic fatal brain disease with no effective treatment or cure and that it does not discriminate against age, race, religion or lifestyle. Because I have experienced great challenges to provide care and support for my son, I know that I am not alone. Most HD families have surmounted unbelievable obstacles caring for their affected family members, yet many are suffering in silence.

While there are still some medical professionals who don’t yet know how to help us and resources that are still not in place to support us, it is my privilege to bring you HELP 4 HD. There is so much to learn from each other and it is in helping others that we too are helped. So, let’s take HD awareness to the next level; let’s start talking about it on BlogTalkRadio! HELP 4 HD is here! Won’t you please join us?

Our guest BJ VIAU works for Lundbeck, Inc. in Movement Disorders Marketing. Lundbeck Inc. is the distributor of Xenazine (Tetrabenazine), the FDA approved medication for the treatment of chorea associated with Huntington’s Disease. He will talk about Lundbeck, Inc. a company that is committed to help families through their journey with HD by offering support, educational opportunities, materials and also participation in fundraising events through charitable donations. See www.xenazineusa.com. He has recently joined the National Youth Alliance (NYA) committee at HDSA (Huntington’s Disease Society of America) and he’s on a kick to educate people about NYA; how this alliance is beneficial for young people and also the benefits of talking to children at an early age about HD. See www.Hdsa.org/nya. WELCOME TO THE SHOW AND THANK YOU FOR JOINING US!!

You may contact me (Melissa Biliardi) at HELP4HD@yahoo.com
CLICK THIS LINK TO GO TO BTR http://www.blogtalkradio.com/help4hd

Labyrinth Workshop, a Walking Meditation by Meta Orear

2010-09-27T21:13:00.000-07:00

We had an amazing two-part program on Thursday, September 23 at our Santa Maria HD Support Group meeting. Meta taught some very basic techniques on how to meditate using two physical sensations, your breath being the first and most important. "Everyone will find their own way, but there are tricks to it" she said.

PART I - MEDITATION

First, breath deeply, in and out. Focus on your breathing. Then after you have done several deep breaths, add a second physical sensation or perception, like the sound of a bird nearby or a song on the radio. In the early 1980's a meditation study was done and it was discovered that if the mind is focusing on two physical sensations, it can't do anything else. It only takes five minutes to drop into a deep meditation by using these techniques.

The main goal in meditation is to find the way that is pleasurable to "you", then focus on the two physical sensations. It can be done anywhere, anytime and has many benefits like lowering blood pressure and it gives your body and mind a chance to reboot and rejuvinate.

Click on this link to see Meta's Full Moon Meta-tation.

PART II - LABYRINTHS

Fun Fun Fundraising at Costa de Oro in Santa Maria

2010-09-20T17:25:00.000-07:00

Many thanks to Gary Burk winemaker/owner of Costa de Oro Winery for donating 20% of his Tasting Room sales to the Santa Maria Huntingtons Disease Support Group Association on Saturday, September 18.

The wine was amazing and the food went fast. Leslie Wilson and tasting room staff were super entertaining and musician Mike Dean stole the show - a one-man show I might add. See one of his performances below.

Every one had a great time for a very great cause. The tally hasn't come in yet, but the need is great and God knows about that, so we'll leave it up to Him.

SMHDSGA will donate a portion of the contributions to HDSA Southern California Chapter, but this is our very first fundraising event and our local HD families need a lot of help too.

The Santa Maria Huntingtons Disease Support Group was formed in June 2010 following the HDSA Santa Maria Symposium, an educational symposium that was sponsored by HDSA (Huntington's Disease Society of America) and Lundbeck, Inc. Numerous families affected by this fatal brain disease in Santa Maria and Lompoc areas are now being helped by the Santa Maria support group.

Thanks to all who participated in our kick-off fundraising event.

For more information about Huntington's disease and local support group activities, contact Melissa Biliardi at (805) 934-9614 or (805) 441-5681.

Labyrinth Workshop Thursday, September 23, 2010, in Santa Maria

2010-09-16T01:54:00.000-07:00

On Thursday, September 23, from 6:30 to 8:00 pm, the Santa Maria Huntingtons Disease Support Group Association will hold a Labyrinth Workshop at IHOP Restaurant located at 202 Nicholson Ave, Santa Maria. This event is open to the public. Cost for this workshop is $20 and refreshments will be served.

Meta Orear, Life Coach and Reiki Master from Full Moon Healing Center in Pacifica, CA, will conduct a workshop to teach basic meditation techniques using labyrinths. Participants will study different labyrinth designs and learn how to create their own simple spiral labyrinths on paper, then layout and experience a Classical 7 Circuit labyrinth through walking, watching or following a lap labyrinth. On Saturday, September 25 there will be a labyrinth field trip. Schedule to be announced at the workshop.

The magic of walking a labyrinth lies in the turns. Every time we change directions, we activate the opposing side of the brain. We physically strengthen the connection between the rational (left) brain and the intuitive/creative (right) brain. Gayle Joseph, on her website for the Cedar Water Healing Lodge, beautifully describes the benefits of labyrinth meditation. See www.gaylejoseph.com/New_Custom_4.html.

“Research conducted at the Harvard Medical School’s Mind/Body Medical Institute by Dr. Herbert Benson has found that focused walking meditations are highly efficient at reducing anxiety and eliciting what Dr. Benson calls the ‘relaxation response’. Some of the long-term health benefits produced by walking a labyrinth include lowering blood pressure and breathing rates, reduced incidents of chronic pain, reduction of insomnia, plus many other benefits. Regular meditative practice leads to greater powers of concentration and sense of control. Walking a labyrinth is one of the simplest forms of a focused walking meditation. The demonstrated health benefits of walking a labyrinth have led hundreds of hospitals, health care facilities and spas to install and provide access to labyrinths for their patients, clients and the general public.”

For more information about the Labyrinth Workshop sponsored by the Santa Maria Huntingtons Disease Support Group Association, contact Melissa Biliardi at mjbiliardi@verizon.net or call 805-441-5618 or 934-9614.

# # #

Fundraiser for Santa Maria HD Support Group, Saturday, September 18, 2010

2010-09-03T14:55:00.000-07:00

YOU ARE INVITED! The Santa Maria Huntingtons Disease Support Group Association will kick off their first fundraising event at Costa de Oro Winery.

WHEN: Saturday, September 18, 2010

WHERE: Costa de Oro Winery

ADDRESS: 1331 S. Nicholson Avenue

Santa Maria, CA

TIME: 1:00 to 4:00 pm

CONTACT: Melissa Biliardi 805-441-5618

Wine pours $7.

Hors d’oeuvres will be served.

Gary Burk, son of Ron Burk founding member of the parent company Gold Coast Farms, is a world-class award winning winemaker for Costa de Oro Winery and has graciously offered to donate a percentage of his tasting room proceeds between 1:00 - 4:00 pm to benefit the Santa Maria Huntingtons Disease Support Group Association. The money donated will pay for programs and services for local support group members with a portion to be donated to HDSA (Huntington’s Disease Society of America) for research, education and outreach.

The Santa Maria Huntington’s Disease Support Group was formed in June 2010 following the HDSA Santa Maria Symposium, an educational symposium that was sponsored by HDSA and Lundbeck Inc. Numerous families affected by this disease in the Santa Maria and Lompoc areas are now being helped by the Santa Maria support group.

Huntington’s Disease is a devastating hereditary, neurodegenerative and fatal brain disorder that results in a loss of cognitive, behavioral and physical control for which there is no cure. Once a person is diagnosed, they will have to bear another 10-25 years with progressive debilitating suffering. Eventually, a person with HD becomes totally dependent upon others for their care. Children of a parent with HD have a 50% chance of developing the disease. There are two classifications of HD; adult onset and juvenile onset (JHD).

We hope to see you on Saturday. IF YOU CAN'T COME TO OUR EVENT, will you please make a donation to HDSA Southern California Region? Any amount you give is a gift of love and hope for thousands of people like my son James, who was diagnosed with JHD (Juvenile Huntington's Disease) in 2008. View these links about JHD: http://video.yahoo.com/watch/6912288/1797685 and http://video.yahoo.com/watch/3132555/889396.

For more information about this fundraising event for the Santa Maria Huntingtons Disease Support Group Association, please contact Melissa Biliardi at mjbiliardi@verizon.net; or cell 805-441-5618 and phone 805-934-9614.

###

The Huntington’s Disease Society of America is the largest 501(c)(3) non-profit volunteer organization dedicated to improving the lives of everyone affected by Huntington’s Disease. Founded in 1968 by Marjorie Guthrie, wife of folk music legend Woody Guthrie who lost his battle with HD, the Society works tirelessly to provide the family services, education, advocacy and research to provide help for today, hope for tomorrow to the more than 30,000 people diagnosed with HD in the United States. The Society is comprised of 39 local chapters and affiliates across the country with its headquarters in New York City.

To learn more about Huntington’s disease and to get involved in HDSA, please visit www.hdsa.org or call 1-800-345-HDSA.

Santa Maria HD Support Group Meeting August 26

2010-08-28T23:30:00.000-07:00

Carla Muller, Eldercare Advisor, A Place For Mom

Thursday, August 26, 2010 we had an awesome support group meeting. Our guest speaker, Carla Muller, Eldercare Advisor from A Place For Mom http://www.aplaceformom.com/ gave a very informative and interesting presentation about Adult Care options. The focus of her presentation was to give us pertinent information about the differences, pay options and cost structures of hospital/skilled nursing, home care, and assisted living facilities. Her role as Eldercare Advisor first is to assess the families needs and then make recommendations and referrals. She expressed the importance of having Wills, Power of Attorney and Advanced Health Care Directives in place for our loved ones.

My initial contact with A Place For Mom was impressive. I found their link on the Internet while doing some research for topics to present to our group. I clicked on it, typed in my info and while I was still typing my message, a chat box popped up introducing themselves. Within a few minutes, I was being contacted by our wonderful representative, Carla. Voila! It was so quick, confidential and assuring to know that I could get HELP so quickly! You will absolutely love Carla. With sixteen years of experience focusing on caregiving, she is warm, intuitive, concerned and yet she is such a pro, she knows what information to offer and when to do it. She's incredible and so is A Place For Mom!

Another very wonderful and caring person, Erick Dixon from CCRC (Coast Caregiver Resource Center) has agreed to be our co-facilitator. It was unanimous, she is a perfect fit for our group. CCRC is a three-county program of Cottage Rehabilitation Hospital, one of a network 11 of centers funded by the California Department of Mental Health and serves adults with cognitive disorders by helping those who care for them. Go to http://www.coastcrc.org/ for more information about this great resource for the caregivers. For you caregivers, it would be worth contacting CCRC to find out if you qualify for respite funds. Thank you Ericka!

We had a winner for our 'Name the Mascot' contest which was held on August 15 at Family Day in the Park. By the way, our mascot is a very cute black and white Shitz Tzu (stuffed toy). We had 25 entries for this contest where each child submitted a name they thought befitted our little 'puppy'. We put it to vote at our meeting and it was decided, his name is Huntington. Go figure. The little man who submitted that name received a gift certificate from Toy's R Us.

Our next event will be a fundraiser on Saturday, September 18 from 1:00 to 4:00 pm. at Costa de Oro Tasting Room, 1331 S Nicholson Ave, Santa Maria, CA 93454. There will be finger foods and wine and 25% of the proceeds will go to our support group for programs like our YMCA membership program and our Labyringh Workshop. Please join us for some food, fun and fantastic wine!

Our next meeting will be on September 23 at Marian Medical Center, 1400 E Church, Santa Maria at 6:30. We will have a special guest teacher for a Labyrinth Workshop where we will discuss the benefits of meditation. We will look at a short history of labyrinths and some great pictures. Then we will be able to create our own simple spiral labyrinth on paper and experience a Classical 7 Circuit labyrinth through walking, watching, or following a lap labyrinth.

Please contact Melissa Biliardi about the Labyrinth Workshop on September 23rd, for sign-up or information call: 805-441-5618

Next Santa Maria HD Support Group Meeting

2010-08-21T18:37:00.000-07:00

Hello everyone!

The Santa Maria HD Support Group meets on the 4th Thursday of each month. Our next meeting will be on Thursday, August 26.

Where:
Marian Medical Center

1400 E. Church St. Room A

Santa Maria, CA 93455

When:
Thursday, August 26, 6:30 - 8:00 pm

Contact:
Melissa Biliardi at 805-441-5618 or email at mjbiliardi@verizon.net

For more information about events, meetings and fundraisers you may also go to:
Facebook.com/Hdsgcc Ca

Twitter/Mbiliardi

There's a whole world of HD communities out there looking for you. Welcome to our HD family! Hope to see you real soon.

Family Day in the Park, August 15, Waller Park Santa Maria

2010-08-21T18:30:00.000-07:00

Family Day in the Park last Sunday, August 15, was so much fun. The Santa Maria HD Support Group and the ladies from Cal Poly HD Awareness Project got together at booth #12 for a day of games and prizes to promot HD awareness.

We had a painting station for the kids to create their masterpieces, a bean bag toss and a Name The Mascot contest. HDSA donated promo items to captivate our audience.

We talked to a few hundred people about Huntington's disease and found a few more HD families to invite to our support group meetings. It was a great way to reach out to hundreds of people in one awesome place.

Thank you HDSA for all your support and for the amazing promo items. Everyone was so impressed with the whole day's events. Visit hdsa.org for more information about the Huntington's Disease Society of America.

Thank you Santa Maria Valley YMCA for sponsoring our booth. You ROCK! Go to smvymca.org to see what they are doing for our community.

Thank you to my BFF's Betty Hogan, Lizanne Boardman and the ladies from Cal Poly HD Awareness Project: Brianna and Natalia.

Our next event will be a fundraiser in September to be announced.

Welcome to our HD Support Group Central Coast California Blog Page

2010-08-14T03:02:00.000-07:00

Welcome friends and family to our HD Support Group Central Coast California blog page. Two years ago, when my son was diagnosed with HD at age 28, we had no one to talk to. The Neurologist gave no counsel other than, “well you have HD and there is no cure”. Thanks! What we needed at the time, of course, was professional genetic counseling and a support group to plug into. Unfortunately, we had neither.

HD came from my husband’s family. But, we are a product of divorce and had little prior exposure to the physical and mental destruction of this disease. What we realize now is that we are on a predestined crash course through HD Hell. So, how can we deal with this Leviathan? Well every person has a different experience as we are finding out. But, all the more reason for us to come together for a common goal; to learn how to cope with this genetic time bomb called Huntington’s Disease.

This is not a disease that affects one family member; the whole family struggles to hold themselves together. If we can help, hope, love and advocate for our HD families, then we can pave the road for better programs and services. Thanks to many good people like Dr. Jan Nolta from UC Davis Stem Cell Program and Dr. Yvette Bordelon from UCLA Movement Disorder Program, this path will eventually lead to better therapies and the cure.

Huntington’s Diseases Society of America (HDSA) is a national non-profit organization whose mission is to help families across the nation with Huntington’s Disease, promote and support research and medical efforts to eradicate this daunting disease. Contact HDSA at http://www.hdsa.org/ where you will find a tremendous amount of help. HDSA has chapters all over the nation to help families in every state and they will help you.

There are many resources which we will post to future blog posts. Please feel free to comment or contact us and be sure to bookmark us into your favorites.

We now have two support groups on the California Central Coast from which to choose.

San Luis Obispo County
California Central Coast Huntington’s Disease Support Group
Contact: Mike Brown, 805-356-4926, mwbrown42@gmail.com
Facebook/California Central Coast Huntington's Disease Support Group

Santa Barbara County
Santa Maria Huntington’s Disease Support Group
Contact: Melissa Biliardi, 805-441-5618, hdsgccc@gmail.com
Facebook/Hdsgccc
Twitter/Mbiliardi

Thank you for caring and visiting our blog page.